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I had an appointment this week for a check up on this disease that is haunting my body.
The heat was already bothering me, due to a heat sensitivity problem I have because of MS.
Finally were there. I manage to get out of the car without falling on my face . My husband comes around the front of car to reach for my hand, as he always does to help with my balance.
Still huffing and puffing from walking a few feet, he say's, honey just a little more to go then we will take the elevator.
Elevator door opens and he hits 2 floor. Door opens and as we get off elevator an elderly woman and her husband are getting into it. As I look, they too are holding hands, and I notice her hands shaking. Like she had tremors. She was kinda stary eyed and looked as thou she had no idea where she was at.
I walked towards the window and couldn't help but wonder if that was what was going to happen to me too.
After being weighed, blood pressure taken I was walked doan a long hall, then down another to then be told to take a right and go to end of hall and take last door on right and have a seat. A seat a I was thinking, hell, I need a bed to lay in....I;m pooped.
The PA comes in and introduces herself and states that she will do initial evaluation on me, but then my neurologist will come in and talk to me.
She checked my reflexes, has me to put my arms out and try to touch my nose, then she takes a pin and touches my cheek. Does this feel better than this, she said as she moved the pin to one side of my face to the other. Then she moved to my arms, "Does this feel different than this"? Yes, I said.
Okay, let me do this...she takes the pin ups up my right leg, then my left leg." Can you tell any difference"?She states. Again, I say, YES.
I have no feeling in my right arm at all, I have little feeling in my right leg, but toes are completely numb. Feet are getting that way.
Then she moves on to, "Have you started any new medications"? No, I say. But, I have been having severe pain in my legs, I have called the after hour number numerous times and was told Dr.Patton would return my call but he didn't. She then say's," well what did you do"? I laid on couch and cried til I begin to scream, I said. I took 2 sleeping pills and prayed I could go to sleep as my husband rubbed my legs.
Well, she say's...Their isn't much that can be done for MS pain and it does get worse, so maybe your's wasn't as bad as you think. (Okay, I got pissed) I said, Look I'm in pain, I can tolerate pain, I had three children with natural childbirth, I have pulled one of my own teeth andI can handle pain, but this pain is excruciating
and I need help.
Is it muscle pain, bone pain, maybe little spasms, what is it, she say's..
Woman, if I knew I wouldn't be here.....
Well, we feel since your already taking Gabapetin , you can add another and it should help with pain, so take two a day and let us know in six weeks how your doing.
The whole time I'm thinking, My neurologist had already had me on 800mg of Gabapentin 4 times a day and it didn't touch the pain, but this idiot wants me to take two and see what will help.
The neurologist then walks in and say's, she has went over your chart with me and I agree with her. Just come back at end of year and we will see how your doing, if you don't need us before then.
Back on elevator we go, door close and I said, Honey, did we miss something? Like my damn appointment. I swear I think I just had a damn nightmare...
Pain still comes and goes, I still cry and get ill, but I have MS. Remember, it's all in my head. I just need to move around more, walk, or run and stop taking pills and those damn shots, my family say's and I will get better,
The neurologist study it, we live it !! Only we know what we go through...... God help us all!!
Anita
30 Eylül 2012 Pazar
Crappy-Crappy Day
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Okay, here goes. Raise your hand if you think multiple sclerosis (MS) is not painful. Keep your hand up if you actually have MS.
Having had the worse two day's of my life is causing me to worry even more, as to what tomorrow may bring?
I have heard of MS pain and actually thought I had it before, but when it struck me a couple of days before, I mentioned to my husband, that I had NEVER used drugs, but at one point considered it.
If you have ever had MS pain you will know what I mean. Painful, isn't it??
I still wonder what tomorrow may bring. We never know do we?
We face each day trying not to worry about that subject, but no matter how hard we try, the thought seeps in light water seeping in a drenched wet tent. Just drip-drip-drip, driving us crazy!
Pain is only one symptom of having MS. We all worry about a day we may end up in a wheel chair, but anything is better than the pain. And I would hate spending my life in a wheel chair. OMG, I would so hate it!
I guess that there may be a couple of you out there with MS who are saying, "Pain? Whaddya mean?" However, I am willing to bet that (like me) most of you have felt pain as part of your MS experience, whether it is from the "MS hug," severe tingling sensations or optic neuritis.
The pain that comes along with MS is different for everybody, both in manifestation and severity, given that there are over 50 symptoms of MS - most of which could have a pain component. Surprisingly, it was only in very recent years that the "experts" believed that MS brought any form of pain.
Multiple sclerosis (MS) can be very painful. In fact, for many of us with MS, it is difficult to believe that as recently as the 1980s, MS was considered a painless condition. I have been struggling to figure out how or why anyone could make that claim, as pain - in many different forms - has been one of the worst manifestations of my MS. It is estimated that around 80% of people with MS experience MS-related pain at some point, and the National Multiple Sclerosis Society estimates that up to 50% of us are plagued by chronic pain.
Tic Doloreux: Trigeminal neuralgia, often called tic doloureux (French for “painful twitch”), is perhaps the most intensely painful MS-related symptom. It can be described most commonly as an intense, sharp pain occurring in the lower part of the face (often triggered by chewing, drinking or brushing one’s teeth). The most intense pain from this is short-lived (from a few seconds to up to two minutes), but can result in a more constant burning or aching. Read the full article: Trigeminal Neuralgia as a Symptom of Multiple Sclerosis.
MS Hug: Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be: felt anywhere on the torso, from the waist to the shoulders; localized (in one small area) or encircle the body; intermittent or constant; felt as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure. Read the full articles: Multiple Sclerosis “Hug” or Girdle-Band Sensation and Tips for Dealing with the MS Hug.
Dysthesia: Usually this refers to a situation where a normal stimulus, such as a light touch, is perceived as painful or otherwise unpleasant, such as burning, itching or prickling.
Parasthesia: This feels like numbness, pins and needles, burning, severe itchiness, tingling, buzzing or vibrating sensations. Although often this is described as extremely annoying and unpleasant, occasionally the sensation can be so intense as to be painful. Read the full article: Numbness and Tingling as a Symptom of Multiple Sclerosis.
Headaches: People with multiple sclerosis are much more prone to migraine-like or cluster headaches than people in the general population. Read the full articles: Headaches as a Symptom of Multiple Sclerosis and Treating Headaches in Multiple Sclerosis.
Optic Neuritis: Most people with optic neuritis (about 90%) experience pain when moving their eyes. This pain usually subsides after a couple of days, even if vision is still affected. Read the full article: Optic Neuritis as a Symptom of Multiple Sclerosis.
Stiffness: A person with MS may experience stiffness in the legs, arms and hips due to immobility.
Back Pain: Back pain can be the result of an unsteady gait, immobility, trying to adapt to the annoying feeling of the MS hug, sitting for extended periods in wheelchairs or any constant adjustment in movement or position as a result of MS symptoms.
Pain from Spasms: Flexor spasms cause a limb to contract, or bend, towards the body. This can make the limb feel like it has a constant cramp or dull ache.
Extensor Spasms: Extensor spasms are when a limb, usually a leg, stiffens and the person is unable to bend the joint. These cause the limb to jerk away from the body. Extensor spasms are usually not very painful, but can be forceful enough to make people fall out of their wheelchairs or beds.
L’Hermitte’s Sign: This is an electric-shock type of sensation that runs down the spine when the head is bent forward.
Since my MS diagnosis, I have experienced these the most:
I just hope I'm wrong, that as your reading, your thinking, WOW, I'm glad I don't have that...... ME TOO!!
Sources:
Alex D Rae-Grant, Nancy J Eckert, Sharon Bartz, and James F Reed. Sensory symptoms of multiple sclerosis: a hidden reservoir of morbidity. Multiple Sclerosis. Jun 1999; vol. 5: pp. 179-183.
Having had the worse two day's of my life is causing me to worry even more, as to what tomorrow may bring?
I have heard of MS pain and actually thought I had it before, but when it struck me a couple of days before, I mentioned to my husband, that I had NEVER used drugs, but at one point considered it.
If you have ever had MS pain you will know what I mean. Painful, isn't it??
I still wonder what tomorrow may bring. We never know do we?
We face each day trying not to worry about that subject, but no matter how hard we try, the thought seeps in light water seeping in a drenched wet tent. Just drip-drip-drip, driving us crazy!
Pain is only one symptom of having MS. We all worry about a day we may end up in a wheel chair, but anything is better than the pain. And I would hate spending my life in a wheel chair. OMG, I would so hate it!
I guess that there may be a couple of you out there with MS who are saying, "Pain? Whaddya mean?" However, I am willing to bet that (like me) most of you have felt pain as part of your MS experience, whether it is from the "MS hug," severe tingling sensations or optic neuritis.
The pain that comes along with MS is different for everybody, both in manifestation and severity, given that there are over 50 symptoms of MS - most of which could have a pain component. Surprisingly, it was only in very recent years that the "experts" believed that MS brought any form of pain.
Multiple sclerosis (MS) can be very painful. In fact, for many of us with MS, it is difficult to believe that as recently as the 1980s, MS was considered a painless condition. I have been struggling to figure out how or why anyone could make that claim, as pain - in many different forms - has been one of the worst manifestations of my MS. It is estimated that around 80% of people with MS experience MS-related pain at some point, and the National Multiple Sclerosis Society estimates that up to 50% of us are plagued by chronic pain.
What Does Pain as a Symptom of Multiple Sclerosis Feel Like?
Pain in MS is complicated. It can fall into one (or more) of the following categories:- Neuropathic pain
- Musculoskeletal or secondary pain
- Paroxysmal pain
Neuropathic pain
Neuropathic pain is the most common kind of pain in MS and is caused by the demyelination of the disease process itself. It can be explained as follows: Nociceptors are nerve endings that specifically detect painful stimuli. When demyelination occurs, nerve signals traveling along nerve cells may get misdirected to nearby nociceptors, which mistakenly communicate pain signals to the brain.Allodynia: This is a particular type of sensory symptom that is in result to a stimulus, such as a person’s touch or even clothing or bed linens touching their skin. It is stimulus-dependent and only lasts as long as the stimulus is present. Allodynia is usually a short-term problem.Tic Doloreux: Trigeminal neuralgia, often called tic doloureux (French for “painful twitch”), is perhaps the most intensely painful MS-related symptom. It can be described most commonly as an intense, sharp pain occurring in the lower part of the face (often triggered by chewing, drinking or brushing one’s teeth). The most intense pain from this is short-lived (from a few seconds to up to two minutes), but can result in a more constant burning or aching. Read the full article: Trigeminal Neuralgia as a Symptom of Multiple Sclerosis.
MS Hug: Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be: felt anywhere on the torso, from the waist to the shoulders; localized (in one small area) or encircle the body; intermittent or constant; felt as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure. Read the full articles: Multiple Sclerosis “Hug” or Girdle-Band Sensation and Tips for Dealing with the MS Hug.
Dysthesia: Usually this refers to a situation where a normal stimulus, such as a light touch, is perceived as painful or otherwise unpleasant, such as burning, itching or prickling.
Parasthesia: This feels like numbness, pins and needles, burning, severe itchiness, tingling, buzzing or vibrating sensations. Although often this is described as extremely annoying and unpleasant, occasionally the sensation can be so intense as to be painful. Read the full article: Numbness and Tingling as a Symptom of Multiple Sclerosis.
Headaches: People with multiple sclerosis are much more prone to migraine-like or cluster headaches than people in the general population. Read the full articles: Headaches as a Symptom of Multiple Sclerosis and Treating Headaches in Multiple Sclerosis.
Optic Neuritis: Most people with optic neuritis (about 90%) experience pain when moving their eyes. This pain usually subsides after a couple of days, even if vision is still affected. Read the full article: Optic Neuritis as a Symptom of Multiple Sclerosis.
Musculoskeletal or Secondary Pain
Also called nociceptive pain, this is usually a result of the symptoms of MS, such as spasticity, weakness, immobility or problems walking, and not the disease process itself. Some examples of this are:Joint Pain: Many people with MS feel pain in the joints of the hips and knees due to imbalance and change in gait.Stiffness: A person with MS may experience stiffness in the legs, arms and hips due to immobility.
Back Pain: Back pain can be the result of an unsteady gait, immobility, trying to adapt to the annoying feeling of the MS hug, sitting for extended periods in wheelchairs or any constant adjustment in movement or position as a result of MS symptoms.
Pain from Spasms: Flexor spasms cause a limb to contract, or bend, towards the body. This can make the limb feel like it has a constant cramp or dull ache.
Paroxysmal Pain
This refers to pain that has an acute (or sudden) onset, stays for just a couple of minutes, then fades rapidly or disappears completely. (Read the full article: Paroxysmal Symptoms of Multiple Sclerosis.) However, there may be residual or lingering pain after the episode. Painful paroxysmal symptoms include:Tic Doloreux: See above.Extensor Spasms: Extensor spasms are when a limb, usually a leg, stiffens and the person is unable to bend the joint. These cause the limb to jerk away from the body. Extensor spasms are usually not very painful, but can be forceful enough to make people fall out of their wheelchairs or beds.
L’Hermitte’s Sign: This is an electric-shock type of sensation that runs down the spine when the head is bent forward.
My MS Experience
We all have our good days and our bad ones. For me, the good days are the ones where I don’t have a symptom that was bad enough to be memorable a week later (as opposed to just those kind of yucky ones that we have learned to live with). I can say that some of my pain symptoms have burned themselves into my memory so well, that I can remember them years later, including the specific circumstances of where I was and what was going on when I felt that degree of pain.Since my MS diagnosis, I have experienced these the most:
- Excruciating “hard-to-catch-my-breath” pain from the MS hugs I have had.
- Dull, achy pains in my legs.
- Pretty severe dysthesia, as well as allodynia, including episodes where my clothes touching my legs felt like stinging insects. "I HATE THIS TOO"
- “Screaming-out-loud” (literally) in pain.
- Facial pain
- Migraine headaches, which I'm still trying to find a fix for? Is there one?
- Severe spasms
- Fingers locking up and being unable to move them.
- What I call, hot spots in my legs and arms, and my feet, they burn like they are frost bitten most of the time.
I just hope I'm wrong, that as your reading, your thinking, WOW, I'm glad I don't have that...... ME TOO!!
Sources:
Alex D Rae-Grant, Nancy J Eckert, Sharon Bartz, and James F Reed. Sensory symptoms of multiple sclerosis: a hidden reservoir of morbidity. Multiple Sclerosis. Jun 1999; vol. 5: pp. 179-183.
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Pain and Multiple Sclerosis - Multiple Sclerosis Pain Experiences
Having the worse two days I have had since being diagnosed. I felt it only right to go out and find others whom may have a story similar to yours or even mine.
We are each individual canvasses which MS creates its own beautiful picture or a horror one due to the symptoms we each share.
Ourpaintings are all different but drawn by the artist known as, Multiple Sclerosis.
Multiple Sclerosis perfers to draw symptoms on women, but men are effected by throw monster artist.
Here are a few stories of pain and their individual stories.
Multiple sclerosis (MS) can be very painful, although many people do not realize the extent to which MS can cause pain and discomfort. I know that it is hard to find words to describe the MS hug or the incessant feeling like ants are biting the soles of your feet. However, the fact that these things are so unique to MS can result in a lack of understanding and empathy, just when you need it the most. This is the place to let it all out, "scream" about how much it hurts sometimes, rant, moan, gripe. Go ahead. We understand. Share With Others
"Theres no pain with MS"
Then there's the Trigimenal Neuralgia, my first 'REAL' symptom. It still comes, and more frequently all the time. These past two weeks have been sheer Hades. And best of all it has not only switched sides, but has now morphed - the entire side of my face into the left side of my head and down my throat. And (new) now I can't drink anything without the most excruciating pain searing through my gums, tongue, face, ear, head. Then when the electricity fades, the is the most dibillitating residual slam to all these areas. My eyesight has become increasingly worse over the past couple of years and yet I can't stand my glasses on my face. I've applied for SS disability after working 35 years of my life. I've been going thru it for 2 years, have 0 income, 0 insurance and yet they think I would choose to live this way to scam them. Do they really think I can work when I can't even remember how to sign my name. When I'm exhausted all the time. When I can't even do the things I love. —GGsNonna
"Theres no pain with MS"
Went to a neurologist a couple of years ago and these are the words he said to me. I didn't go back! So much pain with MS. On an every day basis its the ants biting my feet and the "day after workout" pain in my legs. What I mean by that is that my legs look like a marathon runners. My muscle tone is awesome - hard as a rock. Problem: I haven't done anything more "workout" than walk to the mailbox in 15 years. But I do run a marathon everynight in my sleep. The 'charley horses' in my feet and legs that wake me up at least a dozen times evey night. Then theres the 'hug'. The fact that I can't sit or stand or lay down without moving tryiing to get the pain in my mid back to stop. This lasts for months. Nothing gets done - I can start it but within 30 minutes, I have to move around and the task just sits. Sometimes, I can't even wash the dishes because I can't stand there for 10 minutes without crying. —GGsNonna
Sholder neck and left head pain.
I just went to the Doc's and was told I could take up to 4000 mg of tylonal to cope. I am taking two exceededra .migran tablets every 4 hours to control the pain whoever said MS doesn't hour doesn't have it it's 4:30 in the morning and I'm awake because of the pain I'm sick of everyone telling me is all in my head this shit hurts it travels fr place to place. It's in my gut the gas is unbelievable, going out is a night mare. Does it get Amy better or is it all down hill from here? —Guest Sheryl B
relapsing remitting ms
Tara, you sound just like me. I had symptoms for years that were just brushed off by the dr,,,, but I switched dr's and they said that after a person has 3 episodes that more than likely it is ms. I had the spinal taps and mri's and thats how I got the diagnosis confirmed. I have new pains and symptoms come up all the time. I guess is a progress in learning. Good luck to you Tara ! —Guest kathy williams
M S Pain
I was diagnosed with ms 1995. It has gone in remission few different times now my DR. said i am in my last stage of ms my family,and friends dont understand what im going through i wish they did im always in pain also tremors in my sleep. My two hands hurt too now alott. —Guest annonomous
misdiagnosed fibtomylgia
.. so as I was saying,I told him all my symptoms,and asked him about lupus,he just went along with it,he should have recognized tht something wasn't adding up,I understand tht primary doctors might not get it,bit he is a pain management/physical therepist,he deals with these illnesses daily,I don't understand,how e could have not caught this.so,I have basically been being treated for two illnesses that I am starting to think I don't have.ok, so here,I am, 37,we moved 500 miles away to get me to high dessert as its suppossed to help fibro.it has lessenned some issues,but now other things are acting up,like never before,ths has put me in er as I have no Medicaid for Idaho yet,and wont be able to establish primary Dr till April.thank you Jesus,for tramadol,gabapentin,heating pad,and a husband who loves me,and gives me several masseges a day, to her the knots out,and try and help my spine.it has never been this bad,I have all three things tht are wrong with my back,all acting up at..... —Guest mel
misdiagnosed with fibro
Anyways...ok,so basically ontop of my most apparent,blatent symptoms,of pain,inflammation,fatigue,the underlying stuff tht had just been once in awhile,and just kinda irritating,started manifesting,and necomming very debilitating!this was in 2009,I began researching ontop,becouse people I knew with fibro didn't have ths other junk o was beginning to think I had lupus,becouse one of my friends had it,and she dealt with a lot of the same secondary symptoms,so I documented everything I had,and took it to my Dr,and told him I thgt I had lupus.he agreed thr was definetly more going on thn fibro,but becouse my bloodeork kept returning inconclusive,Medicaid refused to pay for me to see a rhumatologist.so,I just accepted it, and wrote it off as lupus,and tht has been documented in my records tht I have lupus,along with fibro.jump forward another year,I moved, had to establish primary care,in order for new Dr to keep me comming pain meds,I had to see a pain specialist.when he saw me,I told him —Guest mel
thought i was only one
I tried to post comment before,but it wouldn't let me write anymore,and I hit post,phone died,so ill try again!!ok,basically,I'm 37 ,mom of two,and happily married.I have suffered from chronic pain, neuropathy,fatihgue,tremors,spasms,motor skill issues,cognitive issues,etc,etc,etc,all my life.I finally broke down,when I was 29,and told Dr everything, but he only heard a few key things,and fact half my family has fibromylgia, and it was just easier to assume thts what it was,and I didn't know there is a huge difference in the type of pain fibro people get,compared to ms patients.I also have a ton of secondary ailments,that I know now,tht they are all in line with m.s.,thy are not fibro,or lupus,simuliar but no where near wht I experience, you guys on here,your descriptions,are what I've had all my life,tht I didn't know how to explain,I don't feel alone anymore. After several years went by,and the secondary stuff,got worse,to piont it was auctually going from,annoying,.... Hold on... —Guest mel
how come i thought all this was normal?
I have been living with chronic pain,numbness,tingling,and every single symptom tht you all describe here,from the time I was very young,thruout my teens,my twenties,and finally at 29,I just couldn't take it anymore.unfortunately. for me,this was in 2003,when doctors were going crazy,diagnosing everyone and their nieghbor with "fibromylgia ".and then adding fool to the fire was tht I was being told by my mother,sisters,aunts and a bunch of others,tht my mysterious pains,inflammation all sounded like fibromylgia, and becouse I told the Dr it ran in my family,he must have used tht. To determine he didn't need to do anything else,but document just the main fibromylgia,pains,apparently he didn't listen to all my other complaints tht have no relation to fibro.so,I am now under belief,seven years later,tht I was misdiagnosed with fibromylgia. Fir years,I have been dealing with not just muscle a he's here n thr,and stiffness,swelling in joints,hands feet,but also pins n needles in feet,that —Guest mel
All Folks with m.s.
Keep your chin up, When life gets tough you go to fight back. If not i feel your lives may be over. This is "Life" Weaning off the weak. So only the strong will survive. You must prove to your higher power, Or yourself for that matter, That you are worthy of a fortuitous and lavish future with your amazing familys. If being happy, (True Happiness) is what your heart desired. Then my prayers are with you on your journey of happiness. —Guest Bob/Demott
chronic pain
I was diagnoised with ms in2007 it has been a roller coaster ride I take rebif injection.my body is in constant pain in the beginning I was on so much medicine in addition to the rebif.lyrical.loratab.oxycodone.u name it I was on it.but I got tiered of feeling like I was in a zone I mean I was here but felt like I was walking in a time capsule so I stopped takeing all those drugs I just do my rebif injections my body is in constant pain some days r worser than others but I have to manage I take over the counter pain med.with sleep help.I figure if I'm asleep the pain won't b so bad.huh.that's until I'm awaken with pain my neck an shoulders..wow!and my legs I try not to complain..but I am glad that I am able to vent on this page because if don't have ms.r the pain that comes with it..people don't understand they may sympothize by have no idea..and I don't wish this o any one..God bless u all..one day at a time:-) —Guest bev
frustrated
I have had all kinds of test and none come up with anything. I know how alot of you feel. I have pain all over lightheaded,tremors, bladder issues , upset stomach , swallowing issues, vision problems ,headaches, fatigue, low vit d, loss of appetite and swollen neck but they can not find anything wrong. It has been 18 months and I have good and bad days. I just wish someone could shed some light on what is going on. As time goes by my bad days seem more and things are worse. —Guest becca
THIS SUCKS
I have been diagnosed 3 years and it does not get easlier. I weight training as much as I can, eat clean, go to physical therapy once a week, but I still feel like I'm losing the fight. I will not quit however. I don't think people around me understand what I go through. I'm in pain most days especially in my legs. I've learn to become an actress with the smiles and laughter but I still have pain. When the pain is bad, I withdraw from people. emotionally as well. When I do that, people don't understand what's wrong. All I can do at those times is focus on taking care of me and getting me through this time so that I can start feeling better. That's my advise. —Guest Angellica
never ending pain
I have ms found out 2yrs ago I first found out when I had this tingling feeling in my foot and it never went away it moved up to my knee then next morning my left hand to top of my shoulder was tingling never had an attack again then all of sudden I start to hurt everyday now my hands shack I looked it up its part of ms can't bend my head down feel like I get shocked all down my back my feet on my heels hurt so bad now to stand on my vision is blury at times then one night i woke up in so much pain in both legs couldn't bend stand walk had to call ambulance I'm 28 and neve r thought I would be going through this I hope one day they find a cure. —Guest faith
living with the pain
Hi, I too was diagonised with MS nearly 2 1/2 years ago at the age of 56. Like all of you guys with MS the pain is terrible and trying to get around on really bad days can be a real problem. At least I have a walker that helps me stay on my feet and not on the ground. Only take medication for the back pain, which I might add only takes the edge off of it. The most annoying thing that is happening to me at the moment is the severe burning behind the back of my knees when I sit in the recliner or when I go to bed at night. Would like to know what helps that problem. All in all, I say to my self each and every day, that there is a lot worse people suffering than me in the world, and if I wake up breathing every morning, it is another day, and hope that it is a good one. —chikate
Having the worse two days I have had since being diagnosed. I felt it only right to go out and find others whom may have a story similar to yours or even mine.
We are each individual canvasses which MS creates its own beautiful picture or a horror one due to the symptoms we each share.
Ourpaintings are all different but drawn by the artist known as, Multiple Sclerosis.
Multiple Sclerosis perfers to draw symptoms on women, but men are effected by throw monster artist.
Here are a few stories of pain and their individual stories.
Multiple sclerosis (MS) can be very painful, although many people do not realize the extent to which MS can cause pain and discomfort. I know that it is hard to find words to describe the MS hug or the incessant feeling like ants are biting the soles of your feet. However, the fact that these things are so unique to MS can result in a lack of understanding and empathy, just when you need it the most. This is the place to let it all out, "scream" about how much it hurts sometimes, rant, moan, gripe. Go ahead. We understand. Share With Others
"Theres no pain with MS"
Then there's the Trigimenal Neuralgia, my first 'REAL' symptom. It still comes, and more frequently all the time. These past two weeks have been sheer Hades. And best of all it has not only switched sides, but has now morphed - the entire side of my face into the left side of my head and down my throat. And (new) now I can't drink anything without the most excruciating pain searing through my gums, tongue, face, ear, head. Then when the electricity fades, the is the most dibillitating residual slam to all these areas. My eyesight has become increasingly worse over the past couple of years and yet I can't stand my glasses on my face. I've applied for SS disability after working 35 years of my life. I've been going thru it for 2 years, have 0 income, 0 insurance and yet they think I would choose to live this way to scam them. Do they really think I can work when I can't even remember how to sign my name. When I'm exhausted all the time. When I can't even do the things I love. —GGsNonna
"Theres no pain with MS"
Went to a neurologist a couple of years ago and these are the words he said to me. I didn't go back! So much pain with MS. On an every day basis its the ants biting my feet and the "day after workout" pain in my legs. What I mean by that is that my legs look like a marathon runners. My muscle tone is awesome - hard as a rock. Problem: I haven't done anything more "workout" than walk to the mailbox in 15 years. But I do run a marathon everynight in my sleep. The 'charley horses' in my feet and legs that wake me up at least a dozen times evey night. Then theres the 'hug'. The fact that I can't sit or stand or lay down without moving tryiing to get the pain in my mid back to stop. This lasts for months. Nothing gets done - I can start it but within 30 minutes, I have to move around and the task just sits. Sometimes, I can't even wash the dishes because I can't stand there for 10 minutes without crying. —GGsNonna
Sholder neck and left head pain.
I just went to the Doc's and was told I could take up to 4000 mg of tylonal to cope. I am taking two exceededra .migran tablets every 4 hours to control the pain whoever said MS doesn't hour doesn't have it it's 4:30 in the morning and I'm awake because of the pain I'm sick of everyone telling me is all in my head this shit hurts it travels fr place to place. It's in my gut the gas is unbelievable, going out is a night mare. Does it get Amy better or is it all down hill from here? —Guest Sheryl B
relapsing remitting ms
Tara, you sound just like me. I had symptoms for years that were just brushed off by the dr,,,, but I switched dr's and they said that after a person has 3 episodes that more than likely it is ms. I had the spinal taps and mri's and thats how I got the diagnosis confirmed. I have new pains and symptoms come up all the time. I guess is a progress in learning. Good luck to you Tara ! —Guest kathy williams
M S Pain
I was diagnosed with ms 1995. It has gone in remission few different times now my DR. said i am in my last stage of ms my family,and friends dont understand what im going through i wish they did im always in pain also tremors in my sleep. My two hands hurt too now alott. —Guest annonomous
misdiagnosed fibtomylgia
.. so as I was saying,I told him all my symptoms,and asked him about lupus,he just went along with it,he should have recognized tht something wasn't adding up,I understand tht primary doctors might not get it,bit he is a pain management/physical therepist,he deals with these illnesses daily,I don't understand,how e could have not caught this.so,I have basically been being treated for two illnesses that I am starting to think I don't have.ok, so here,I am, 37,we moved 500 miles away to get me to high dessert as its suppossed to help fibro.it has lessenned some issues,but now other things are acting up,like never before,ths has put me in er as I have no Medicaid for Idaho yet,and wont be able to establish primary Dr till April.thank you Jesus,for tramadol,gabapentin,heating pad,and a husband who loves me,and gives me several masseges a day, to her the knots out,and try and help my spine.it has never been this bad,I have all three things tht are wrong with my back,all acting up at..... —Guest mel
misdiagnosed with fibro
Anyways...ok,so basically ontop of my most apparent,blatent symptoms,of pain,inflammation,fatigue,the underlying stuff tht had just been once in awhile,and just kinda irritating,started manifesting,and necomming very debilitating!this was in 2009,I began researching ontop,becouse people I knew with fibro didn't have ths other junk o was beginning to think I had lupus,becouse one of my friends had it,and she dealt with a lot of the same secondary symptoms,so I documented everything I had,and took it to my Dr,and told him I thgt I had lupus.he agreed thr was definetly more going on thn fibro,but becouse my bloodeork kept returning inconclusive,Medicaid refused to pay for me to see a rhumatologist.so,I just accepted it, and wrote it off as lupus,and tht has been documented in my records tht I have lupus,along with fibro.jump forward another year,I moved, had to establish primary care,in order for new Dr to keep me comming pain meds,I had to see a pain specialist.when he saw me,I told him —Guest mel
thought i was only one
I tried to post comment before,but it wouldn't let me write anymore,and I hit post,phone died,so ill try again!!ok,basically,I'm 37 ,mom of two,and happily married.I have suffered from chronic pain, neuropathy,fatihgue,tremors,spasms,motor skill issues,cognitive issues,etc,etc,etc,all my life.I finally broke down,when I was 29,and told Dr everything, but he only heard a few key things,and fact half my family has fibromylgia, and it was just easier to assume thts what it was,and I didn't know there is a huge difference in the type of pain fibro people get,compared to ms patients.I also have a ton of secondary ailments,that I know now,tht they are all in line with m.s.,thy are not fibro,or lupus,simuliar but no where near wht I experience, you guys on here,your descriptions,are what I've had all my life,tht I didn't know how to explain,I don't feel alone anymore. After several years went by,and the secondary stuff,got worse,to piont it was auctually going from,annoying,.... Hold on... —Guest mel
how come i thought all this was normal?
I have been living with chronic pain,numbness,tingling,and every single symptom tht you all describe here,from the time I was very young,thruout my teens,my twenties,and finally at 29,I just couldn't take it anymore.unfortunately. for me,this was in 2003,when doctors were going crazy,diagnosing everyone and their nieghbor with "fibromylgia ".and then adding fool to the fire was tht I was being told by my mother,sisters,aunts and a bunch of others,tht my mysterious pains,inflammation all sounded like fibromylgia, and becouse I told the Dr it ran in my family,he must have used tht. To determine he didn't need to do anything else,but document just the main fibromylgia,pains,apparently he didn't listen to all my other complaints tht have no relation to fibro.so,I am now under belief,seven years later,tht I was misdiagnosed with fibromylgia. Fir years,I have been dealing with not just muscle a he's here n thr,and stiffness,swelling in joints,hands feet,but also pins n needles in feet,that —Guest mel
All Folks with m.s.
Keep your chin up, When life gets tough you go to fight back. If not i feel your lives may be over. This is "Life" Weaning off the weak. So only the strong will survive. You must prove to your higher power, Or yourself for that matter, That you are worthy of a fortuitous and lavish future with your amazing familys. If being happy, (True Happiness) is what your heart desired. Then my prayers are with you on your journey of happiness. —Guest Bob/Demott
chronic pain
I was diagnoised with ms in2007 it has been a roller coaster ride I take rebif injection.my body is in constant pain in the beginning I was on so much medicine in addition to the rebif.lyrical.loratab.oxycodone.u name it I was on it.but I got tiered of feeling like I was in a zone I mean I was here but felt like I was walking in a time capsule so I stopped takeing all those drugs I just do my rebif injections my body is in constant pain some days r worser than others but I have to manage I take over the counter pain med.with sleep help.I figure if I'm asleep the pain won't b so bad.huh.that's until I'm awaken with pain my neck an shoulders..wow!and my legs I try not to complain..but I am glad that I am able to vent on this page because if don't have ms.r the pain that comes with it..people don't understand they may sympothize by have no idea..and I don't wish this o any one..God bless u all..one day at a time:-) —Guest bev
frustrated
I have had all kinds of test and none come up with anything. I know how alot of you feel. I have pain all over lightheaded,tremors, bladder issues , upset stomach , swallowing issues, vision problems ,headaches, fatigue, low vit d, loss of appetite and swollen neck but they can not find anything wrong. It has been 18 months and I have good and bad days. I just wish someone could shed some light on what is going on. As time goes by my bad days seem more and things are worse. —Guest becca
THIS SUCKS
I have been diagnosed 3 years and it does not get easlier. I weight training as much as I can, eat clean, go to physical therapy once a week, but I still feel like I'm losing the fight. I will not quit however. I don't think people around me understand what I go through. I'm in pain most days especially in my legs. I've learn to become an actress with the smiles and laughter but I still have pain. When the pain is bad, I withdraw from people. emotionally as well. When I do that, people don't understand what's wrong. All I can do at those times is focus on taking care of me and getting me through this time so that I can start feeling better. That's my advise. —Guest Angellica
never ending pain
I have ms found out 2yrs ago I first found out when I had this tingling feeling in my foot and it never went away it moved up to my knee then next morning my left hand to top of my shoulder was tingling never had an attack again then all of sudden I start to hurt everyday now my hands shack I looked it up its part of ms can't bend my head down feel like I get shocked all down my back my feet on my heels hurt so bad now to stand on my vision is blury at times then one night i woke up in so much pain in both legs couldn't bend stand walk had to call ambulance I'm 28 and neve r thought I would be going through this I hope one day they find a cure. —Guest faith
living with the pain
Hi, I too was diagonised with MS nearly 2 1/2 years ago at the age of 56. Like all of you guys with MS the pain is terrible and trying to get around on really bad days can be a real problem. At least I have a walker that helps me stay on my feet and not on the ground. Only take medication for the back pain, which I might add only takes the edge off of it. The most annoying thing that is happening to me at the moment is the severe burning behind the back of my knees when I sit in the recliner or when I go to bed at night. Would like to know what helps that problem. All in all, I say to my self each and every day, that there is a lot worse people suffering than me in the world, and if I wake up breathing every morning, it is another day, and hope that it is a good one. —chikate
Just another MSDay
To contact us Click HERE
I thought that today I wou
ld be out riding like I had planned.
But instead I'm piled up on the couch with ice packs behind my back and neck.
It started yesterday afternoon when I started having severe pain in my neck. Nothing
and i mean nothing would keep me from Revival. Especially when Ralph Sexton Jr is preaching.
I'm writing this and all of a sudden sweat breaks out on me. Im puzzled as to why, but this disease has its moments when it lies dormant,than when least expected, it jumps out and scares the whit out of you.
I have had so many scares, if they weren't burnt into my head.
LESIONS
ld be out riding like I had planned.
But instead I'm piled up on the couch with ice packs behind my back and neck.
It started yesterday afternoon when I started having severe pain in my neck. Nothing
and i mean nothing would keep me from Revival. Especially when Ralph Sexton Jr is preaching.
I'm writing this and all of a sudden sweat breaks out on me. Im puzzled as to why, but this disease has its moments when it lies dormant,than when least expected, it jumps out and scares the whit out of you.
I have had so many scares, if they weren't burnt into my head.
LESIONS
So far, the fight is worth watching.
To contact us Click HERE
I actually feel like singing today.
Unlike yesterday(which was terrible)I started the day by thinking, what would I do first?
My husband was still asleep and I kinda slipped out of bed and walked into the kitchen. Again, their were dirty glasses where he had gotten up during the night. If your like me, you can't stand to wake up and find dishes. So, i went directly to the sink. As i started to run water, i remembered I hadn't taken my thyroid medicine, so i stopped water and took my Synthroid.
I hadn't felt this good in months, so I thought, I had better get dressed while glasses were soaking.
I went to bedroom ( Where Denver was still snoozing) and gathered what I was wearing for the day and took it quietly to the bathroom. there I started to dress and as I looked into mirror, I remembered back last year.
There I was in hospital (Again) taking infusions of Sol-Medrol and tasting the metal you always do. I still had a nurse that sit with me daily and kept the house clean, but with each drop that came from that Steroid bag hanging from the IV, a touch of hatred came from me.
I hated MS and what it was doing to my body. I was always tired, weak and either stumbling or falling. The weakness and intense pain was why I was lying there getting another infusion. Not sure if it;s having to go to hospital and have infusions during lunch time (ha-ha) or the stupid steroids themselves, but with each steroid visit, my body gained another pound.
I hated being over weight, but my precious husband just said, baby your not fat, your beautiful. I think that is what made the weight easier to adjust to.
I gradually got dressed and put on a touch of blush and eye liner. Just enough makeup that I didn't look pale and sickly.
Back to finish dishes as I tiptoed by Denver and into the kitchen.
Why not put in a load of sheets Denver had stripped from bed yesterday and wash. So, I gathered laundry up and put them in to wash.
Just by what little I had done, My body was getting weaker and a couch looked like a comfy place to crash for a second or two.
After about twenty minutes I was back up. Gatorade and more medicine time.
The Synthroid has labeling to take by itself with glass of water, so now was morning medicine time.
Nitrofur-Macr, Lisinopril, Cymbalta, Omeprazole, Donepezal, Liratadine, Meloxicim, Gabapentin, Wellbutrin.
I hated taking medicine, for some reason I have chocked a lot on just anything I took and after one really big scare, I had learned to crush my medicine.
After six years, you really learn to just put them into your mouth and chew them up.
I turned the television on to keep me company and took cleaner out and cleaned the kitchen cabinets, wiped down the refrigerator and microwave.
Being a person who suffers from OCD, I looked at carpet and noticed it really needed to be vacuumed. I hated vacuuming and hadn't actually done it since having a nurse, but since pitching on of my tantrums and feeling like someone was always watching me, the nurse from home health had been released a month ago. Denver was good about keeping carpet cleaned, but why is it, a woman feels lie she can always clean her house better than a man? Anyway, I knew that dragging the vacuum around would wear me out, I just left it.
I swept kitchen and started to dust when washer shut off.
Damn, another weak spell and back to the couch I went. Grabbing more to drink on the way. I don't understand why, but one moment I'm sweating and feeling like I have stood outside in a rain storm and the next I'm cold.
Having one of those cold times, i got up slowly from couch and got an afghan from chair beside me.
Huddled under my little tent is when my husband walked in. Bless his heart, he came straight to couch and asked, if I was okay.
I have been here now since approximately noon and life with MS is easier when you know you can go online and talk to others about it.
I know your thinking, she stared post out by saying, she feels like singing?
YOUR DARN TOOTING I DO!
I'm not in a bed waiting on someone to feed me like I was six years ago. Nor am I sitting in a wheel chair like I had been three years ago. I actually got out of bed myself and tried to do a little house work.
If I have to stay on this couch ALL day, at least I know I'm winning and this battle isn't over.
Life is precious and it has taken me a long-long time to realize it. Sad, I didn't know just how precious until this disease tried taking hold of me. Well, I guess I could say, it has wrapped it's arms around me, but I be damn if it's going to place a tight hold on me and me not fight back.
MS is a disease that affects the brain and spinal cord, resulting in loss of muscle control, vision, balance, and sensation (such as numbness). With this disease, the nerves of the brain and spinal cord are damaged by our own immune system. Thus, the condition is called an autoimmune disease.
If you know anything about this, you know their is NO CURE!
No one knows what causes the body's immune system to go awry, but some scientists believe that it is a combination of genetics and something in the environment to which the person was exposed to early in life.
God only know's I wish what had happened to me to cause this, but I will never know, not in this life, so I will just fight it.
Please if your reading this and you have MS, don't give up. Don't think life is going to be easy, it's not.
You will feel like your alone in the world, you will have good days and bad days and you may even feel like your going crazy. But FIGHT BACK, don't let this monster win.
I'm going to lay here enjoy the rest of my day and may even sing out loud.
Heck, what am I saying, Youtube is filled with lyrics, so off I go....
Love to all and keep pulling. Who know's, a cure could be tomorrow?
Multiple Sclerosis and Fatigue
I actually feel like singing today.
Unlike yesterday(which was terrible)I started the day by thinking, what would I do first?
My husband was still asleep and I kinda slipped out of bed and walked into the kitchen. Again, their were dirty glasses where he had gotten up during the night. If your like me, you can't stand to wake up and find dishes. So, i went directly to the sink. As i started to run water, i remembered I hadn't taken my thyroid medicine, so i stopped water and took my Synthroid.
I hadn't felt this good in months, so I thought, I had better get dressed while glasses were soaking.
I went to bedroom ( Where Denver was still snoozing) and gathered what I was wearing for the day and took it quietly to the bathroom. there I started to dress and as I looked into mirror, I remembered back last year.
There I was in hospital (Again) taking infusions of Sol-Medrol and tasting the metal you always do. I still had a nurse that sit with me daily and kept the house clean, but with each drop that came from that Steroid bag hanging from the IV, a touch of hatred came from me.
I hated MS and what it was doing to my body. I was always tired, weak and either stumbling or falling. The weakness and intense pain was why I was lying there getting another infusion. Not sure if it;s having to go to hospital and have infusions during lunch time (ha-ha) or the stupid steroids themselves, but with each steroid visit, my body gained another pound.
I hated being over weight, but my precious husband just said, baby your not fat, your beautiful. I think that is what made the weight easier to adjust to.
I gradually got dressed and put on a touch of blush and eye liner. Just enough makeup that I didn't look pale and sickly.
Back to finish dishes as I tiptoed by Denver and into the kitchen.
Why not put in a load of sheets Denver had stripped from bed yesterday and wash. So, I gathered laundry up and put them in to wash.
Just by what little I had done, My body was getting weaker and a couch looked like a comfy place to crash for a second or two.
After about twenty minutes I was back up. Gatorade and more medicine time.
The Synthroid has labeling to take by itself with glass of water, so now was morning medicine time.
Nitrofur-Macr, Lisinopril, Cymbalta, Omeprazole, Donepezal, Liratadine, Meloxicim, Gabapentin, Wellbutrin.
I hated taking medicine, for some reason I have chocked a lot on just anything I took and after one really big scare, I had learned to crush my medicine.
After six years, you really learn to just put them into your mouth and chew them up.
I turned the television on to keep me company and took cleaner out and cleaned the kitchen cabinets, wiped down the refrigerator and microwave.
Being a person who suffers from OCD, I looked at carpet and noticed it really needed to be vacuumed. I hated vacuuming and hadn't actually done it since having a nurse, but since pitching on of my tantrums and feeling like someone was always watching me, the nurse from home health had been released a month ago. Denver was good about keeping carpet cleaned, but why is it, a woman feels lie she can always clean her house better than a man? Anyway, I knew that dragging the vacuum around would wear me out, I just left it.
I swept kitchen and started to dust when washer shut off.
Damn, another weak spell and back to the couch I went. Grabbing more to drink on the way. I don't understand why, but one moment I'm sweating and feeling like I have stood outside in a rain storm and the next I'm cold.
Having one of those cold times, i got up slowly from couch and got an afghan from chair beside me.
Huddled under my little tent is when my husband walked in. Bless his heart, he came straight to couch and asked, if I was okay.
I have been here now since approximately noon and life with MS is easier when you know you can go online and talk to others about it.
I know your thinking, she stared post out by saying, she feels like singing?
YOUR DARN TOOTING I DO!
I'm not in a bed waiting on someone to feed me like I was six years ago. Nor am I sitting in a wheel chair like I had been three years ago. I actually got out of bed myself and tried to do a little house work.
If I have to stay on this couch ALL day, at least I know I'm winning and this battle isn't over.
Life is precious and it has taken me a long-long time to realize it. Sad, I didn't know just how precious until this disease tried taking hold of me. Well, I guess I could say, it has wrapped it's arms around me, but I be damn if it's going to place a tight hold on me and me not fight back.
MS is a disease that affects the brain and spinal cord, resulting in loss of muscle control, vision, balance, and sensation (such as numbness). With this disease, the nerves of the brain and spinal cord are damaged by our own immune system. Thus, the condition is called an autoimmune disease.
If you know anything about this, you know their is NO CURE!
No one knows what causes the body's immune system to go awry, but some scientists believe that it is a combination of genetics and something in the environment to which the person was exposed to early in life.
God only know's I wish what had happened to me to cause this, but I will never know, not in this life, so I will just fight it.
Please if your reading this and you have MS, don't give up. Don't think life is going to be easy, it's not.
You will feel like your alone in the world, you will have good days and bad days and you may even feel like your going crazy. But FIGHT BACK, don't let this monster win.
I'm going to lay here enjoy the rest of my day and may even sing out loud.
Heck, what am I saying, Youtube is filled with lyrics, so off I go....
Love to all and keep pulling. Who know's, a cure could be tomorrow?
Multiple Sclerosis and Fatigue
Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.
Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.
According to the National Multiple Sclerosis Society, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue©2005-2012 WebMD, LLC. All rights reserved.
29 Eylül 2012 Cumartesi
Researchers reveal the hidden proteins that could hold the key to dementia and MS
To contact us Click HERE
Scientists are to launch a major study of little-known proteins they believe are a contributing factor to diseases such as dementia and multiple sclerosis.
The team of biologists at the University of Portsmouth have been awarded £600,000 to research the impact on the ageing of the brain and cognitive decline.
The study will focus on a protein known as Kir4.1 which is a key element in controlling special cells in the brain and spinal cord which form myelin, a substance which insulates the brain’s wiring.
A close up image of oligodendrocytes, a protein scientists believe is a contributing factor to diseases such as dementia and multiple sclerosis.
They discovered that the protein is critical in ensuring these cells, known as oligodendrocytes, function well.
The researchers already know that myelin acts as the insulating layer around nerve cells and is essential for rapid conduction of information and when it is damaged this interferes with messages between the brain and other parts of the body.
They are also researching another protein called Gas6 which they have discovered can stimulate oligodendrocyte production and survival.
The team’s combined research will focus on signals in the brain which stimulate the growth and regeneration of oligodendrocytes and myelin.
Read more: http://www.dailymail.co.uk/sciencetech/article-2208863/Amazing-images-proteins-hold-key-dementia-MS.html#ixzz27jCMesMS
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- Amazing images show the proteins responsible for devastating brain diseases
- Scientists plan to study them in the hope of finding new therapies
Scientists are to launch a major study of little-known proteins they believe are a contributing factor to diseases such as dementia and multiple sclerosis.
The team of biologists at the University of Portsmouth have been awarded £600,000 to research the impact on the ageing of the brain and cognitive decline.
The study will focus on a protein known as Kir4.1 which is a key element in controlling special cells in the brain and spinal cord which form myelin, a substance which insulates the brain’s wiring.
A close up image of oligodendrocytes, a protein scientists believe is a contributing factor to diseases such as dementia and multiple sclerosis.They discovered that the protein is critical in ensuring these cells, known as oligodendrocytes, function well.
The researchers already know that myelin acts as the insulating layer around nerve cells and is essential for rapid conduction of information and when it is damaged this interferes with messages between the brain and other parts of the body.
They are also researching another protein called Gas6 which they have discovered can stimulate oligodendrocyte production and survival.
The team’s combined research will focus on signals in the brain which stimulate the growth and regeneration of oligodendrocytes and myelin.
Read more: http://www.dailymail.co.uk/sciencetech/article-2208863/Amazing-images-proteins-hold-key-dementia-MS.html#ixzz27jCMesMS
..
If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
Gene Activity Defines Two Types of MS
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This report is part of a 12-month Clinical Context series.By John Gever, Senior Editor, MedPage TodayPublished: September 27, 2012
Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston and Dorothy Caputo, MA, BSN, RN, Nurse Planner
Gene transcription patterns separate multiple sclerosis (MS) patients into two groups, one of which appears more responsive than the other to standard therapies, researchers said.
In a study of 315 patients with relapsing-remitting MS and 48 with clinically isolated syndrome (a single demyelinating event), those with a transcription profile denoted as type B who were treated with glatiramer acetate (Copaxone) or interferon-beta drugs were significantly less likely to develop a major disease event than those with a type A profile, reported Philip De Jager, MD, PhD, of Brigham and Women's Hospital in Boston, and colleagues.The hazard ratio for a disease event -- a demyelination event, new T2 hyperintense or gadolinium-enhancing lesion on MRI scans, or sustained 6-month disability progression -- was 0.6 for type B versus type A (95% CI 0.41 to 0.87, P=0.0077), the researchers reported online in Science Translational Medicine."This hazard ratio suggests that [patients with type B] MS are 40% less likely to have a relapse than [type A] MS," De Jager and colleagues wrote. "Stratifying MS subjects into meaningful subsets in this manner has potential for personalizing patient care and for enhancing our understanding of this disease."They acknowledged, however, that their study had important limitations -- they did not evaluate responsiveness to other MS drugs such as fingolimod (Gilenya) or natalizumab (Tysabri), nor did they include patients with primary or secondary progressive MS.READ MORE
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This report is part of a 12-month Clinical Context series.By John Gever, Senior Editor, MedPage TodayPublished: September 27, 2012
Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston and Dorothy Caputo, MA, BSN, RN, Nurse Planner
Gene transcription patterns separate multiple sclerosis (MS) patients into two groups, one of which appears more responsive than the other to standard therapies, researchers said.
In a study of 315 patients with relapsing-remitting MS and 48 with clinically isolated syndrome (a single demyelinating event), those with a transcription profile denoted as type B who were treated with glatiramer acetate (Copaxone) or interferon-beta drugs were significantly less likely to develop a major disease event than those with a type A profile, reported Philip De Jager, MD, PhD, of Brigham and Women's Hospital in Boston, and colleagues.The hazard ratio for a disease event -- a demyelination event, new T2 hyperintense or gadolinium-enhancing lesion on MRI scans, or sustained 6-month disability progression -- was 0.6 for type B versus type A (95% CI 0.41 to 0.87, P=0.0077), the researchers reported online in Science Translational Medicine."This hazard ratio suggests that [patients with type B] MS are 40% less likely to have a relapse than [type A] MS," De Jager and colleagues wrote. "Stratifying MS subjects into meaningful subsets in this manner has potential for personalizing patient care and for enhancing our understanding of this disease."They acknowledged, however, that their study had important limitations -- they did not evaluate responsiveness to other MS drugs such as fingolimod (Gilenya) or natalizumab (Tysabri), nor did they include patients with primary or secondary progressive MS.READ MORE
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If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
A Medicare Enrollment Reminder
To contact us Click HERE
The Medicareannual enrollment period begins Oct. 15th and runs through Dec. 7th. Duringthis time, all Medicare beneficiaries have the option to change their Medicarecoverage for the coming year. This includes anyone using traditional Medicare,Medicare Advantage, and prescription drug coverage. In addition to reviewingMedicare plan changes, beneficiaries should make sure they are taking advantageof savings provided through the Affordable Care Act (ACA) this year.
“Take timeto review the information you receive and look at all of your Medicareoptions,” says Mary Dale Walters, senior vice president of Allsup and the Allsup Medicare Advisor®,a Medicare plan selection service for Medicare-eligible individuals.“You may find more affordable coverage through a different combination of plans–whether Medicare Advantage or traditional Medicare with Part D and Medigapplans. Keep in mind that you may see a lot of ads for Medicare plans, but therecould be a plan that’s perfect for you that isn’t getting a lot of attentionwith ads and mailers.”
Allsup is anationwide provider of Medicare plan selection services and Social Securitydisability representation. For more information visit www.allsup.com/allsup-explains-updates-for-medicare-enrollment.aspx.
information source: The MSFYi newsletter
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If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
The Medicareannual enrollment period begins Oct. 15th and runs through Dec. 7th. Duringthis time, all Medicare beneficiaries have the option to change their Medicarecoverage for the coming year. This includes anyone using traditional Medicare,Medicare Advantage, and prescription drug coverage. In addition to reviewingMedicare plan changes, beneficiaries should make sure they are taking advantageof savings provided through the Affordable Care Act (ACA) this year.
“Take timeto review the information you receive and look at all of your Medicareoptions,” says Mary Dale Walters, senior vice president of Allsup and the Allsup Medicare Advisor®,a Medicare plan selection service for Medicare-eligible individuals.“You may find more affordable coverage through a different combination of plans–whether Medicare Advantage or traditional Medicare with Part D and Medigapplans. Keep in mind that you may see a lot of ads for Medicare plans, but therecould be a plan that’s perfect for you that isn’t getting a lot of attentionwith ads and mailers.”
Allsup is anationwide provider of Medicare plan selection services and Social Securitydisability representation. For more information visit www.allsup.com/allsup-explains-updates-for-medicare-enrollment.aspx.
information source: The MSFYi newsletter
..
If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
October is National Physical Therapy Month
To contact us Click HERE
As weprepare to move into National Physical Therapy Month, it is a good time reviewhow physical therapy can help someone with MS. As many have experienced, thesymptoms of MS can affect your ability to move around. You may be experiencingtightness, pain, and weakness, especially in the muscles and joints. This iswhere physical therapy may help. An article in WebMD explains:
Physicaltherapy cannot cure the primary symptoms of MS (such as weakness, tremors,tingling, numbness, loss of balance, vision impairment, paralysis, and bladderor bowel dysfunction), but therapy can enable you to compensate for the changesbrought about by MS. These "compensatory treatments," as they'recalled, include learning about new movement techniques, strategies, and equipment.
Physicaltherapy can also be very helpful at lessening secondary symptoms of MS. Aphysical therapist can teach you exercises to strengthen and loosen muscles.Many of these exercises can be performed at home. The goal of physical therapyis to improve your independence and quality of life by improving movement andfunction and relieving pain.
Physicaltherapy can help with:
Balanceproblems
Lack of coordination
Fatigue
Pain
Immobility
Weakness.
Manyhospitals offer outpatient physical therapy services. However, you may need toget a doctor's order to be seen in physical therapy. If you feel you canbenefit from physical therapy, ask your doctor for a referral.
Treatmentsin physical therapy often can be completed in one to three office visits. Thefirst appointment includes an evaluation and recommendations for exercises. Thefollowing appointments check your progress and review and expand your homeprogram.
Mosthospitals can provide additional sessions of outpatient physical therapy if aphysical therapist is needed to attain an expected improvement in function.
To learnmore about physical therapy, visit http://www.moveforwardpt.com/Default.aspx
source: The MSFYi newsletter
..
If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
As weprepare to move into National Physical Therapy Month, it is a good time reviewhow physical therapy can help someone with MS. As many have experienced, thesymptoms of MS can affect your ability to move around. You may be experiencingtightness, pain, and weakness, especially in the muscles and joints. This iswhere physical therapy may help. An article in WebMD explains:
Physicaltherapy cannot cure the primary symptoms of MS (such as weakness, tremors,tingling, numbness, loss of balance, vision impairment, paralysis, and bladderor bowel dysfunction), but therapy can enable you to compensate for the changesbrought about by MS. These "compensatory treatments," as they'recalled, include learning about new movement techniques, strategies, and equipment.
Physicaltherapy can also be very helpful at lessening secondary symptoms of MS. Aphysical therapist can teach you exercises to strengthen and loosen muscles.Many of these exercises can be performed at home. The goal of physical therapyis to improve your independence and quality of life by improving movement andfunction and relieving pain.
Physicaltherapy can help with:
Balanceproblems
Lack of coordination
Fatigue
Pain
Immobility
Weakness.
Manyhospitals offer outpatient physical therapy services. However, you may need toget a doctor's order to be seen in physical therapy. If you feel you canbenefit from physical therapy, ask your doctor for a referral.
Treatmentsin physical therapy often can be completed in one to three office visits. Thefirst appointment includes an evaluation and recommendations for exercises. Thefollowing appointments check your progress and review and expand your homeprogram.
Mosthospitals can provide additional sessions of outpatient physical therapy if aphysical therapist is needed to attain an expected improvement in function.
To learnmore about physical therapy, visit http://www.moveforwardpt.com/Default.aspx
source: The MSFYi newsletter
..
If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
Clinical trial to begin in B.C. for liberation therapy
To contact us Click HERE
A long-awaited national trial of a controversial experimental treatment for multiple sclerosis has been given the go-ahead and will soon begin recruiting patients in B.C. and Quebec.
The $6-million trial of "liberation therapy," a type of balloon angioplasty that widens the jugular and azygous veins, has received ethical approval to proceed, federal Health Minister Leona Aglukkaq announced Friday.
About 100 people in B.C. and Quebec are expected to take part in the trial, which is a collaboration between the federal government, British Columbia, Quebec and the MS Society of Canada.
"I think it's extremely important to investigate it in Canada," said Dr. Bill Code, 59, a former anesthesiologist diagnosed with secondary progressive multiple sclerosis in 1996.
Code, a father of three who lives in Duncan, had the procedure in Newport Beach, Calif., in November 2010. He said it was worth the $7,500 cost, plus flight expenses and $5,400 for specialized MRI testing in Buffalo, N.Y.
"It was outstandingly effective for me. It limited my headaches - I had tons of those - it really improved my fatigue and it took away most of my cognitive fog, or clouded thinking," he said.
Code now cycles up to 80 kilo-metres a day and operates a small organic farm on his Vancouver Island property.
Continue Reading
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If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
A long-awaited national trial of a controversial experimental treatment for multiple sclerosis has been given the go-ahead and will soon begin recruiting patients in B.C. and Quebec.
BY VANCOUVER SUNA long-awaited national trial of a controversial experimental treatment for multiple sclerosis has been given the go-ahead and will soon begin recruiting patients in B.C. and Quebec.
The $6-million trial of "liberation therapy," a type of balloon angioplasty that widens the jugular and azygous veins, has received ethical approval to proceed, federal Health Minister Leona Aglukkaq announced Friday.
About 100 people in B.C. and Quebec are expected to take part in the trial, which is a collaboration between the federal government, British Columbia, Quebec and the MS Society of Canada.
"I think it's extremely important to investigate it in Canada," said Dr. Bill Code, 59, a former anesthesiologist diagnosed with secondary progressive multiple sclerosis in 1996.
Code, a father of three who lives in Duncan, had the procedure in Newport Beach, Calif., in November 2010. He said it was worth the $7,500 cost, plus flight expenses and $5,400 for specialized MRI testing in Buffalo, N.Y.
"It was outstandingly effective for me. It limited my headaches - I had tons of those - it really improved my fatigue and it took away most of my cognitive fog, or clouded thinking," he said.
Code now cycles up to 80 kilo-metres a day and operates a small organic farm on his Vancouver Island property.
Continue Reading
..
If you would like, you can comment to our blog posts LIKE this Blog by clicking the LIKE button - top left REMAIN up to date with MS News and EducationVisit: www.msviewsandnews.org to register.
28 Eylül 2012 Cuma
MS CCSVI: Dr. Hubbard connects Multiple Sclerosis to CCSVI theory
To contact us Click HERE
Check out this video about a neurologist's point of view of Multiple Sclerosis and MS CCSVI, after his son is diagnosed with Multiple Sclerosis.
This video discusses another way of doing a "study" for people, diagnosed with Multiple Sclerosis in connecton with the blood flow blockages to the veins in the the neck or the upper chest that has been called chronic cerebrospinal venous insufficiency or CCSVI.
This video discusses another way to classify studies for MS and CCSVI, as data collection, that focuses more on the venous insufficiency rather than the Multiple Sclerosis.
This way of viewing the blood flow blockages appears to allow for legitimate funding for the study, that is being done, while making it possible for more of the costs of testing and having the procedure done to open up blood flow blockages to be covered by insurance, rather than making it so the the MS patients have to cover the cost of the testing and the procedure.
This is the first study that is being conducted in this way with MS patients and the venous blood flow blockages, but there is the potential for this type of study to become a way of doing more studies throughout the USA, making it possible for doctors to collect more data, scientifically, while allowing MS patients to be able to be tested and evaluated for CCSVI, as well as actually having the procedure done too.
Click on the link below to watch the video for more details.
http://www.komonews.com/home/video/106175483.html?tab=video
Interesting, but only available in San Diego, CA area at this point.
Have you heard about this, yet?
Please leave your comments, as to what you think about this video or if you know anything else about this.
****
This video discusses another way of doing a "study" for people, diagnosed with Multiple Sclerosis in connecton with the blood flow blockages to the veins in the the neck or the upper chest that has been called chronic cerebrospinal venous insufficiency or CCSVI.
This video discusses another way to classify studies for MS and CCSVI, as data collection, that focuses more on the venous insufficiency rather than the Multiple Sclerosis.
This way of viewing the blood flow blockages appears to allow for legitimate funding for the study, that is being done, while making it possible for more of the costs of testing and having the procedure done to open up blood flow blockages to be covered by insurance, rather than making it so the the MS patients have to cover the cost of the testing and the procedure.
This is the first study that is being conducted in this way with MS patients and the venous blood flow blockages, but there is the potential for this type of study to become a way of doing more studies throughout the USA, making it possible for doctors to collect more data, scientifically, while allowing MS patients to be able to be tested and evaluated for CCSVI, as well as actually having the procedure done too.
Click on the link below to watch the video for more details.
http://www.komonews.com/home/video/106175483.html?tab=video
Interesting, but only available in San Diego, CA area at this point.
Have you heard about this, yet?
Please leave your comments, as to what you think about this video or if you know anything else about this.
****
B12 and MS: What form of B12 Helps Reverse MS Nerve Damage?
To contact us Click HERE
When it comes to B12 and MS, can taking B12 help to reduce or even reverse MS nerve damage?
I am so excited to tell you about what I am finding with taking higher doses of vitamin B12, how it is helping with reducing, or maybe even reversing MS nerve damage and increasing how well my nerves are functioning with Multiple Sclerosis.
I have had several problems with my nerves not functioning as they should because of the more severe effects of Multiple Sclerosis attacks on my body, which taking the higher dosage of vitamin B12 has been helping to reduce.
Taking a higher dose of vitamin B12 has been helping in several ways, but taking the B12 only helps if you take it in certain forms and in combination with B complex.
Click on the link to read more -- B12 and MS
If you have found this information helpful or if you would like to add anything further, leave us your comments! We would love to hear what you think about this topic!
***
I am so excited to tell you about what I am finding with taking higher doses of vitamin B12, how it is helping with reducing, or maybe even reversing MS nerve damage and increasing how well my nerves are functioning with Multiple Sclerosis.
I have had several problems with my nerves not functioning as they should because of the more severe effects of Multiple Sclerosis attacks on my body, which taking the higher dosage of vitamin B12 has been helping to reduce.
Taking a higher dose of vitamin B12 has been helping in several ways, but taking the B12 only helps if you take it in certain forms and in combination with B complex.
Click on the link to read more -- B12 and MS
If you have found this information helpful or if you would like to add anything further, leave us your comments! We would love to hear what you think about this topic!
***
Reversing Multiple Sclerosis Neuropathy or MS Nerve Damage Using Vitamin B12?
To contact us Click HERE
When it comes to Multiple Sclerosis neuropathy or MS nerve damage
is there anything natural or alternative that can help to reverse the
damage to the nerves, or at least reduce the problems with the
nerves functioning?
That is one of the big questions, when it comes to Multiple Sclerosis.
I have been searching for something myself, when it comes to
reversing or at least reducing the peripheral neuropathy or nerve
damage or nerve function problems, which my doctor has told
me for several years that I have had a major problem with,
since I was diagnosed with Multiple Sclerosis.
I am excited to say that I think I found something that is
helping to reduce the nerve function problems in my legs,
feet, hands, and arms in many ways.
What is it that can help??
Vitamin B12 is a natural way to help repair nerve damage...at least
that is what information I found, while doing my own research for me.
I am so excited to let you know about what I am finding
that taking extra of vitamin B12 is helping with, when it
comes to Multiple Sclerosis neuropathy or MS nerve damage.
I'm not totally sure that taking the higher doses of B12 will reverse
the nerve damage totally or the peripheral neuropathy, just yet, since
I have only been taking extra vitamin B12 myself for 2 weeks, but
since I started taking the extra B12, I have already found that my
legs and feet and hands are functioning so much
better than they have for years.
If you are at least curious as to how I have found that taking
the extra B12 is helping me with nerve function, then...
Click on either link to find out more -- Multiple Sclerosis neuropathy or MS nerve damage
If you have found this information to be helpful to you, or if you have anything else that you would like to add, about this topic, leave us your comments and let us know! We would love to hear what you think about this topic!
***
is there anything natural or alternative that can help to reverse the
damage to the nerves, or at least reduce the problems with the
nerves functioning?
That is one of the big questions, when it comes to Multiple Sclerosis.
I have been searching for something myself, when it comes to
reversing or at least reducing the peripheral neuropathy or nerve
damage or nerve function problems, which my doctor has told
me for several years that I have had a major problem with,
since I was diagnosed with Multiple Sclerosis.
I am excited to say that I think I found something that is
helping to reduce the nerve function problems in my legs,
feet, hands, and arms in many ways.
What is it that can help??
Vitamin B12 is a natural way to help repair nerve damage...at least
that is what information I found, while doing my own research for me.
I am so excited to let you know about what I am finding
that taking extra of vitamin B12 is helping with, when it
comes to Multiple Sclerosis neuropathy or MS nerve damage.
I'm not totally sure that taking the higher doses of B12 will reverse
the nerve damage totally or the peripheral neuropathy, just yet, since
I have only been taking extra vitamin B12 myself for 2 weeks, but
since I started taking the extra B12, I have already found that my
legs and feet and hands are functioning so much
better than they have for years.
If you are at least curious as to how I have found that taking
the extra B12 is helping me with nerve function, then...
Click on either link to find out more -- Multiple Sclerosis neuropathy or MS nerve damage
If you have found this information to be helpful to you, or if you have anything else that you would like to add, about this topic, leave us your comments and let us know! We would love to hear what you think about this topic!
***
MS News and MS CCSVI What Next?
To contact us Click HERE
At this point, there is still much talk about the MS news or MS CCSVI connection.
The initial study of Dr. Paolo Zamboni, released the results of a 2 year study in 2009, which suggested that there may be a link between MS and CCSVI, a condition where there are blockages in the veins of the neck or the upper chest, which prevent the blood draining away from the brain in people, diagnosed with Multiple Sclerosis.
Dr. Zamboni's initial study, in combination with the results from the Buffalo, NY study of 2010 of MS patients revealed that people, diagnosed with Multiple Sclerosis, have a much higher incident rate for the presence of CCSVI, than people who weren't diagnosed with MS.
How does any of this apply to you, who have been diagnosed with Multiple Sclerosis?
Does this idea about the potential MS CCSVI link apply to the majority of people, diagnosed with Multiple Sclerosis?
According to the MS CCSVI study performed in Buffalo, NY in 2010, there appears 50% of the people with MS in the study appeared to have the condition of CCSVI.
But further studies need to be done to confirm these preliminary findings, in the exploration into the theory of the possible link between MS and CCSVI.
Click on the link to read more -- MS news
If you have found this information to be helpful, or if you would like to leave a comment related to Multiple Sclerosis, please leave us your comments! We would love to hear from you!
*** We wish you the best on your quest to wellness! The "Taming Multiple Sclerosis" Team www.TamingMultipleSclerosis.com
The initial study of Dr. Paolo Zamboni, released the results of a 2 year study in 2009, which suggested that there may be a link between MS and CCSVI, a condition where there are blockages in the veins of the neck or the upper chest, which prevent the blood draining away from the brain in people, diagnosed with Multiple Sclerosis.
Dr. Zamboni's initial study, in combination with the results from the Buffalo, NY study of 2010 of MS patients revealed that people, diagnosed with Multiple Sclerosis, have a much higher incident rate for the presence of CCSVI, than people who weren't diagnosed with MS.
How does any of this apply to you, who have been diagnosed with Multiple Sclerosis?
Does this idea about the potential MS CCSVI link apply to the majority of people, diagnosed with Multiple Sclerosis?
According to the MS CCSVI study performed in Buffalo, NY in 2010, there appears 50% of the people with MS in the study appeared to have the condition of CCSVI.
But further studies need to be done to confirm these preliminary findings, in the exploration into the theory of the possible link between MS and CCSVI.
Click on the link to read more -- MS news
If you have found this information to be helpful, or if you would like to leave a comment related to Multiple Sclerosis, please leave us your comments! We would love to hear from you!
*** We wish you the best on your quest to wellness! The "Taming Multiple Sclerosis" Team www.TamingMultipleSclerosis.com
MS and Coffee or Multiple Sclerosis and Coffee
To contact us Click HERE
Is MS and coffee or Multiple Sclerosis and coffee drinking a good idea?
After you have been diagnosed with Multiple Sclerosis, could drinking coffee or eating foods containing coffee, as an ingredient, cause problems with aggravating the symptoms of MS?
There are pros and cons, when it comes to drinking coffee or eating foods that contain coffee, as an ingredient, after you have been diagnosed with Multiple Sclerosis.
Not all caffeine is the same. Coffee metabolizes differently, than the caffeine in chocolate or tea or other foods or drink, but there are a few things that drinking coffee can aggravate, when it comes to also having Multiple Sclerosis.
Drinking coffee or eating other foods that contain coffee can cause some MS symptoms to become worse, especially if coffee is something that you drink most days of the week.
Click on the link to read more -- MS and coffee
If you have found this information to be helpful, or if you would like to add anything else about this topic, please leave us your comments! We would love to hear what you think!
***
After you have been diagnosed with Multiple Sclerosis, could drinking coffee or eating foods containing coffee, as an ingredient, cause problems with aggravating the symptoms of MS?
There are pros and cons, when it comes to drinking coffee or eating foods that contain coffee, as an ingredient, after you have been diagnosed with Multiple Sclerosis.
Not all caffeine is the same. Coffee metabolizes differently, than the caffeine in chocolate or tea or other foods or drink, but there are a few things that drinking coffee can aggravate, when it comes to also having Multiple Sclerosis.
Drinking coffee or eating other foods that contain coffee can cause some MS symptoms to become worse, especially if coffee is something that you drink most days of the week.
Click on the link to read more -- MS and coffee
If you have found this information to be helpful, or if you would like to add anything else about this topic, please leave us your comments! We would love to hear what you think!
***
27 Eylül 2012 Perşembe
Lifestyle changes give hope to MS sufferers
To contact us Click HERE
A WESTERN Australian physician and his research team have reported positive results in managing Multiple Sclerosis (MS) through lifestyle modifications.
The study, ‘Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with multiple sclerosis,’ published in the international journal Neurological Sciences, is based on healthy lifestyle changes that Professor George Jelinek has successfully followed himself since his diagnosis of MS thirteen years ago.
The research was carried out over five years with a study cohort of over 300 people diagnosed with MS.
Participants committed to a lifestyle modification program at an MS retreat at the Gawler Foundation in Victoria.
After a baseline assessment participants were asked to complete a lengthy questionnaire one year after the MS retreat and again five years later.
Results after one year showed a median improvement of 11.3 per cent in overall quality of life and after five years this percentage rose to 19.5 per cent.
“Where else in all MS literature will you find an intervention showing nearly 20 per cent improvement in mental and physical health and overall quality of life, five years after diagnosis?” says Prof Jelinek.
Medicinal doses of Vitamin D, sunlight, regular exercise, omega-3 fatty acids, low saturated fat diet, largely plant-based wholefoods and fish are recommended.
Stress reducing activities such as meditation and yoga, and group and individual counselling sessions form part of the retreat program.
Disease-modifying drugs administered early in the illness and steroids for any distressing acute relapses were also supported.
However, the research anecdotally reports that many participants were not taking immune-modulating therapies.
Professor Jelinek says it is wonderful to see many of the participants years later, looking happy and radiating optimism and often in considerably better health.
“For some people there is no improvement, but for others the improvement is much more dramatic,” he says.
“Many patients report the clearing of MS lesions from MRI scans.
“Many experience life in a completely different way and their optimism and good health affect every aspect of their lives.”
The Overcoming Multiple Sclerosis (OMS) research is now expanding to use a larger cohort.
“We hope to answer important questions, essentially what can one do to change the course of MS and which particular lifestyle factors are the most important,” says Professor Jelinek.
Professor Jelinek combines his work as an emergency surgeon in Western Australia, an MS researcher and group leader at the Gawler retreat.
http://www.sciencewa.net.au/topics/health-a-medicine/item/1605-lifestyle-changes-give-hope-to-ms-sufferers
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter.
If you have found this post of interest, the please feel free to share it with your online community via the share buttons below. Thank you.
A WESTERN Australian physician and his research team have reported positive results in managing Multiple Sclerosis (MS) through lifestyle modifications.The study, ‘Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with multiple sclerosis,’ published in the international journal Neurological Sciences, is based on healthy lifestyle changes that Professor George Jelinek has successfully followed himself since his diagnosis of MS thirteen years ago.
The research was carried out over five years with a study cohort of over 300 people diagnosed with MS.
Participants committed to a lifestyle modification program at an MS retreat at the Gawler Foundation in Victoria.
After a baseline assessment participants were asked to complete a lengthy questionnaire one year after the MS retreat and again five years later.
Results after one year showed a median improvement of 11.3 per cent in overall quality of life and after five years this percentage rose to 19.5 per cent.
“Where else in all MS literature will you find an intervention showing nearly 20 per cent improvement in mental and physical health and overall quality of life, five years after diagnosis?” says Prof Jelinek.
Medicinal doses of Vitamin D, sunlight, regular exercise, omega-3 fatty acids, low saturated fat diet, largely plant-based wholefoods and fish are recommended.
Stress reducing activities such as meditation and yoga, and group and individual counselling sessions form part of the retreat program.
Disease-modifying drugs administered early in the illness and steroids for any distressing acute relapses were also supported.
However, the research anecdotally reports that many participants were not taking immune-modulating therapies.
Professor Jelinek says it is wonderful to see many of the participants years later, looking happy and radiating optimism and often in considerably better health.
“For some people there is no improvement, but for others the improvement is much more dramatic,” he says.
“Many patients report the clearing of MS lesions from MRI scans.
“Many experience life in a completely different way and their optimism and good health affect every aspect of their lives.”
The Overcoming Multiple Sclerosis (OMS) research is now expanding to use a larger cohort.
“We hope to answer important questions, essentially what can one do to change the course of MS and which particular lifestyle factors are the most important,” says Professor Jelinek.
Professor Jelinek combines his work as an emergency surgeon in Western Australia, an MS researcher and group leader at the Gawler retreat.
http://www.sciencewa.net.au/topics/health-a-medicine/item/1605-lifestyle-changes-give-hope-to-ms-sufferers
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter.
If you have found this post of interest, the please feel free to share it with your online community via the share buttons below. Thank you.
Inspiring people at Revive...
To contact us Click HERE
There's been so much talk recently of inspiring individuals from the Olympics that it reminded me of a blog I started writing last year about some of the inspirational people I've come across working at Revive.
I thought this time round it would be good to use this as an excuse to find out about what makes our new Trustee tick! I don't know if I'm just really nosey, but I LOVE hearing people's stories! Think you'll find his work life, and personal life very interesting!
Welcome to Revive Derek! :)
Atypical day for me is a 7:30 start with time for a leisurely breakfast beforethe long commute - all the way upstairs to the office. The way our business is setup now I can dothis and know that we can manage to grow and do all we need to do.
Myworking from home is not an excuse for not working though. Im pretty sure that I work more hours thanaverage, but I have to say I love the absence of the typical commute to workand the flexibility that I have got in my work life now. Im certainly happier and healthier these days and I am extremely gratefulfor my life and my work. If I am goinganywhere now it is likely that Im going to see clients somewhere in the UK orgetting on a plane. Despite the factthat I don’t commute I'm still clocking up around 90,000 miles per year so I doget to drive which is one of my passions. 
AlthoughI do have some other business interests most of my time is applied as anOwner/Director of a local rehabilitation technology business. We founded thisin 1997 and I'm pleased to say that we have grown steadily over the years. When we started up it was very part-time as Iwas working every day as an academic and it took a while to commit to thisventure.
Althoughwe do not often work with MS clients, we do deal directly with the NHS andprivate clients all over the UK and other parts of Europe. We work with many persons managing spinalcord injuries, or recovering from a stroke, orthopaedic conditions or diabeticfoot care issues.
Whatwe have seen over the years is the growth in the private side of our businessas people with chronic conditions learn that the NHS simply can’t do everythingfor them. Often this comes as a bigshock because many of us grew up with the notion that the NHS would always bethere to care for us if we needed them. An organisation such as Revive is indeed a precious jewel as it providesservices that simply would not happen otherwise.
Afriend with MS had mentioned Revive to me some time ago and it has been reallyinteresting to see how much they play an extremely important and practical rolein supporting persons with MS. As a newTrustee of Revive Im looking forward to participating in Revive’s brightfuture. Im hoping that my own experienceand contacts can help support the aims and objectives of Revive.
Imsupposed to tell you a bit about myself. The formal bit of my profile goes something like this - “A versatile, MBA qualified and highlycommercial Board Executive, with a demonstrable track record of successspanning more than 20 years gained in bio-engineering, R&D and high levelacademic roles in the medical technology and healthcare rehabilitationsectors.”
WhenI think back to teen years I really wanted to be either a professionalmotorcycle racer or a rock star - and flirted with both with differing degreesof success. One of my realisationslooking back was that instead of really committing to my dream I listenedinstead to the sensible advice to get a proper job. Having said that I am still passionate aboutmotorcycles and am riding some 45 years after getting my first bike. Yes - I still have the leather romper suitand all the gear. I enjoy driving carsand bikes and anything like that. I have often said if the day comes when Ineed a mobility scooter it had better have a big engine.
Mysensible work history allowed me to train as a professional engineer. Healthcare has always been of interest to mealthough I really didn't fancy the idea of being a doctor or anything likethat. Allowing curiosity to influence myfuture plans meant that I chose to spend 3 years at Strathclyde Universitystudying for a PhD in Bioengineering. After the PhD I worked in Canada in the late 1970‘s. Cross appointments between the University ofToronto and local hospitals allowed me to develop and lead multi-professionalresearch teams in a number of areas including orthopaedic implant design andsurgical technique development. In theearly 1980’s I joined the University of Strathclyde in the National Centre forProsthetics and Orthotics and like most academics was involved in a mix ofresearch, teaching and administrative duties.
Iwas always fascinated with the processes of creating products from a germ of anidea and thought taking an MBA would give me more of clue about this and theworld of business. I would say that inthe early 1980’s most MBAs were not set up to guide entrepreneurs and althoughI enjoyed the programme it probably set me back from starting my own businessfor five years at least. One of thethings that the MBA didn’t do is teach me how to deal with the fear that comeswhenever we want to break away from the way things are and change things in ourlives. As human beings I see that oftenwe think too much and feel too little. Ifeel incredibly grateful for the health, energy and life circumstances I enjoy- and I wish you all the same feelings.
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter. If you have some free time, and energy, and would like to volunteer with Revive, please contact cara for more information!
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I thought this time round it would be good to use this as an excuse to find out about what makes our new Trustee tick! I don't know if I'm just really nosey, but I LOVE hearing people's stories! Think you'll find his work life, and personal life very interesting!
Welcome to Revive Derek! :)
Atypical day for me is a 7:30 start with time for a leisurely breakfast beforethe long commute - all the way upstairs to the office. The way our business is setup now I can dothis and know that we can manage to grow and do all we need to do.
Myworking from home is not an excuse for not working though. Im pretty sure that I work more hours thanaverage, but I have to say I love the absence of the typical commute to workand the flexibility that I have got in my work life now. Im certainly happier and healthier these days and I am extremely gratefulfor my life and my work. If I am goinganywhere now it is likely that Im going to see clients somewhere in the UK orgetting on a plane. Despite the factthat I don’t commute I'm still clocking up around 90,000 miles per year so I doget to drive which is one of my passions. AlthoughI do have some other business interests most of my time is applied as anOwner/Director of a local rehabilitation technology business. We founded thisin 1997 and I'm pleased to say that we have grown steadily over the years. When we started up it was very part-time as Iwas working every day as an academic and it took a while to commit to thisventure. Althoughwe do not often work with MS clients, we do deal directly with the NHS andprivate clients all over the UK and other parts of Europe. We work with many persons managing spinalcord injuries, or recovering from a stroke, orthopaedic conditions or diabeticfoot care issues.
Whatwe have seen over the years is the growth in the private side of our businessas people with chronic conditions learn that the NHS simply can’t do everythingfor them. Often this comes as a bigshock because many of us grew up with the notion that the NHS would always bethere to care for us if we needed them. An organisation such as Revive is indeed a precious jewel as it providesservices that simply would not happen otherwise.
Afriend with MS had mentioned Revive to me some time ago and it has been reallyinteresting to see how much they play an extremely important and practical rolein supporting persons with MS. As a newTrustee of Revive Im looking forward to participating in Revive’s brightfuture. Im hoping that my own experienceand contacts can help support the aims and objectives of Revive.
Imsupposed to tell you a bit about myself. The formal bit of my profile goes something like this - “A versatile, MBA qualified and highlycommercial Board Executive, with a demonstrable track record of successspanning more than 20 years gained in bio-engineering, R&D and high levelacademic roles in the medical technology and healthcare rehabilitationsectors.”
WhenI think back to teen years I really wanted to be either a professionalmotorcycle racer or a rock star - and flirted with both with differing degreesof success. One of my realisationslooking back was that instead of really committing to my dream I listenedinstead to the sensible advice to get a proper job. Having said that I am still passionate aboutmotorcycles and am riding some 45 years after getting my first bike. Yes - I still have the leather romper suitand all the gear. I enjoy driving carsand bikes and anything like that. I have often said if the day comes when Ineed a mobility scooter it had better have a big engine.Mysensible work history allowed me to train as a professional engineer. Healthcare has always been of interest to mealthough I really didn't fancy the idea of being a doctor or anything likethat. Allowing curiosity to influence myfuture plans meant that I chose to spend 3 years at Strathclyde Universitystudying for a PhD in Bioengineering. After the PhD I worked in Canada in the late 1970‘s. Cross appointments between the University ofToronto and local hospitals allowed me to develop and lead multi-professionalresearch teams in a number of areas including orthopaedic implant design andsurgical technique development. In theearly 1980’s I joined the University of Strathclyde in the National Centre forProsthetics and Orthotics and like most academics was involved in a mix ofresearch, teaching and administrative duties.
Iwas always fascinated with the processes of creating products from a germ of anidea and thought taking an MBA would give me more of clue about this and theworld of business. I would say that inthe early 1980’s most MBAs were not set up to guide entrepreneurs and althoughI enjoyed the programme it probably set me back from starting my own businessfor five years at least. One of thethings that the MBA didn’t do is teach me how to deal with the fear that comeswhenever we want to break away from the way things are and change things in ourlives. As human beings I see that oftenwe think too much and feel too little. Ifeel incredibly grateful for the health, energy and life circumstances I enjoy- and I wish you all the same feelings.
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter. If you have some free time, and energy, and would like to volunteer with Revive, please contact cara for more information!
If you have found this post of interest, the please feel free to share it with your online community via the share buttons below. Thank you.
Worried about your waterworks? Revive offers a continence service that will get you on the right track!
To contact us Click HERE
In light of the new guidance from NICE on urinaryincontinence in neurological diseases, I thought it would be the perfectopportunity to highlight that you can access our Continence Nurse, Lesley atRevive.
Not only does Lesley take appointments at our centre inMaryhill, but she will also come out for home visits. It's well worth arranging to see Lesley ifyou do have any worries about urinary incontinence. She'll be able to assess you and makerecommendations that will take away the stress and anxiety. Just call 0141 945 3344 and ask to make anappointment.
For your information, the article below is from the MS Trustsummarising the guidelines that NICE have recommended.
Author: MS Trust, 09 August 2012
The guideline recommends that detailed assessments should be offered to people who have neurological conditions including MS
The National Institute of Health and Clinical Excellence (NICE) has published Clinical Guideline 148 on urinary incontinence in neurological disease: management of lower urinary tract dysfunction in neurological disease. The MS Trust contributed as a member of the Urology User Group Coalition.
NICE clinical guidelines set standards for high quality healthcare for people with specific conditions or diseases and the treatments they should receive. There is a version of the guideline for patients and carers which can be downloaded from the NICE web site (see link below). This document aims to explain the care and treatment options that should be available in the NHS.
The guideline recommends that detailed assessments should be offered to people who have neurological conditions, including stroke, MS and head and spinal cord injuries, who are experiencing incontinence or other urinary problems. The aim of the guideline is to minimise the distressing effect that bladder symptoms can have on people with neurological conditions, and their families, and to promote active participation in their care.
Healthcare professionals are advised to assess other health issues including bowel and sexual problems, the use of medications and therapies, as well as other factors such as mobility, hand function, cognitive function, social support and lifestyle which may affect how incontinence or other urinary problems can be managed. The guideline recommends that patients are reassessed at least every three years, with more frequent reassessments for some patients depending on their individual circumstances.
A UK consensus on the management of bladder symptoms in multiple sclerosis was published in 2009. It makes recommendations on the assessment and most appropriate management techniques for the different presentations of bladder problems in MS. Management techniques may be as simple as reviewing fluid intake and bladder retraining. In other cases medication may be prescribed or catheterisation required. Bladder problems can be managed by a nurse or a specialist continence advisor.
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter.
If you have found this post of interest, the please feel free to share it with your online community via the share buttons below. Thank you.
Not only does Lesley take appointments at our centre inMaryhill, but she will also come out for home visits. It's well worth arranging to see Lesley ifyou do have any worries about urinary incontinence. She'll be able to assess you and makerecommendations that will take away the stress and anxiety. Just call 0141 945 3344 and ask to make anappointment.
For your information, the article below is from the MS Trustsummarising the guidelines that NICE have recommended.
Author: MS Trust, 09 August 2012The guideline recommends that detailed assessments should be offered to people who have neurological conditions including MS
The National Institute of Health and Clinical Excellence (NICE) has published Clinical Guideline 148 on urinary incontinence in neurological disease: management of lower urinary tract dysfunction in neurological disease. The MS Trust contributed as a member of the Urology User Group Coalition.
NICE clinical guidelines set standards for high quality healthcare for people with specific conditions or diseases and the treatments they should receive. There is a version of the guideline for patients and carers which can be downloaded from the NICE web site (see link below). This document aims to explain the care and treatment options that should be available in the NHS.
The guideline recommends that detailed assessments should be offered to people who have neurological conditions, including stroke, MS and head and spinal cord injuries, who are experiencing incontinence or other urinary problems. The aim of the guideline is to minimise the distressing effect that bladder symptoms can have on people with neurological conditions, and their families, and to promote active participation in their care.
Healthcare professionals are advised to assess other health issues including bowel and sexual problems, the use of medications and therapies, as well as other factors such as mobility, hand function, cognitive function, social support and lifestyle which may affect how incontinence or other urinary problems can be managed. The guideline recommends that patients are reassessed at least every three years, with more frequent reassessments for some patients depending on their individual circumstances.
A UK consensus on the management of bladder symptoms in multiple sclerosis was published in 2009. It makes recommendations on the assessment and most appropriate management techniques for the different presentations of bladder problems in MS. Management techniques may be as simple as reviewing fluid intake and bladder retraining. In other cases medication may be prescribed or catheterisation required. Bladder problems can be managed by a nurse or a specialist continence advisor.
"Bladder symptoms are often reported by people with MS. They can have a significant impact on quality of life and on emotional well being. There are a number of ways to manage bladder symptoms and it is vital that people with MS get the advice and help they need. The MS Trust welcomes the publication of this guideline which, together with the UK consensus on the management of bladder symptoms in MS, should allow better assessment and treatment of bladder symptoms for people with MS."
Amy Bowen, Director of Service Development, MS Trust
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter.
If you have found this post of interest, the please feel free to share it with your online community via the share buttons below. Thank you.
Coming to Glasgow this Autumn: 2 amazing plays featuring MS in VERY different ways!
To contact us Click HERE
The first features Alison Peebles, a great friend and supporter of Revive MS Support. My Shrinking Life will run from 12-15 September at the Trongate Theatre, Glasgow.
As I struggle inelegantly on my crutches, toddlers, who have just discovered the wobbly freedom of their own two feet, whizz past me. People amble, stride, jog and just…walk. It is a gift they don’t know they have, and one I never considered until I began to lose it.
Alison Peebles is a leading Scottish actor who once gave an acclaimed performance as Lady Macbeth and in many others memorable roles. But that’s not the point.
Alison Peebles has primary progressive MS which was first diagnosed 12 years ago, after a series of falls as a creeping numbness spread throughout her body. But maybe that’s not the point either. The point is that she is a vulnerable as all of us.
Thomas, Katie and Hanna are beautiful young performers, but it’s not important that they have healthy, flexible, reliable bodies. What’s important is that their minds and their emotions can be as unpredictable as Alison’s body.
My Shrinking Life is a confrontation between fundamental concepts in human life, between weakness and vanity, between choice and coercion, between movement and stasis, beginnings and ends.
Celebratory, irreverent and, at times, surreal, My Shrinking Life examines the emotional and physical journey we are all on as vulnerable, fragile people, diagnosed or not.
The 2nd play, The Monster in the Hall, is a low budget indie comedy musical about a girl on the verge of a nervous breakdown played out by four actors and a big fat motorbike which goes vrrooommm. Presented by the National Theatre of Scotland it will be playing at the Citizens Theatre, Glasgow, in a double-bill with Yellow Moon on the 8th September.
Duck Macatarsney cares for her biker dad whose MS is getting increasingly bad. Her Dad - Duke - is a spliff smoking (for medicinal reasons you understand), bike riding, heavy metal and horror movie loving, pizza eating widower who's brought up Duck since the death of her Mother in a crash. The two of them are just about surviving when one morning the Duke wakes up blind and the Duck hears that the Social Services are coming to take her away.
This is a wildly imaginative musical comedy about a teenager trying to protect her world from the terrifying prospect of change. It is performed with minimal props and no sets with the stripped-back production style creating an up-close intimacy with the audience. Writer David Greig really taps into the heart-breaking emotional highs and lows of the lives of young carers.
WINNER of BEST ENSEMBLE at The Stage Awards for Acting Excellence 2011.
“An imaginative synthesis of Beauty and the Beast, pop songs, heavy metal, and rapid-fire acting.”
The Independent ****
“Performed at breath-taking speed and simply fizzing with energy”
The Times ****
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter.
If you have found this post of interest, the please feel free to share it with your online community via the share buttons below. Thank you.
As I struggle inelegantly on my crutches, toddlers, who have just discovered the wobbly freedom of their own two feet, whizz past me. People amble, stride, jog and just…walk. It is a gift they don’t know they have, and one I never considered until I began to lose it.
Alison Peebles is a leading Scottish actor who once gave an acclaimed performance as Lady Macbeth and in many others memorable roles. But that’s not the point. Alison Peebles has primary progressive MS which was first diagnosed 12 years ago, after a series of falls as a creeping numbness spread throughout her body. But maybe that’s not the point either. The point is that she is a vulnerable as all of us.
Thomas, Katie and Hanna are beautiful young performers, but it’s not important that they have healthy, flexible, reliable bodies. What’s important is that their minds and their emotions can be as unpredictable as Alison’s body.
My Shrinking Life is a confrontation between fundamental concepts in human life, between weakness and vanity, between choice and coercion, between movement and stasis, beginnings and ends.
Celebratory, irreverent and, at times, surreal, My Shrinking Life examines the emotional and physical journey we are all on as vulnerable, fragile people, diagnosed or not.
The 2nd play, The Monster in the Hall, is a low budget indie comedy musical about a girl on the verge of a nervous breakdown played out by four actors and a big fat motorbike which goes vrrooommm. Presented by the National Theatre of Scotland it will be playing at the Citizens Theatre, Glasgow, in a double-bill with Yellow Moon on the 8th September.
Duck Macatarsney cares for her biker dad whose MS is getting increasingly bad. Her Dad - Duke - is a spliff smoking (for medicinal reasons you understand), bike riding, heavy metal and horror movie loving, pizza eating widower who's brought up Duck since the death of her Mother in a crash. The two of them are just about surviving when one morning the Duke wakes up blind and the Duck hears that the Social Services are coming to take her away.
This is a wildly imaginative musical comedy about a teenager trying to protect her world from the terrifying prospect of change. It is performed with minimal props and no sets with the stripped-back production style creating an up-close intimacy with the audience. Writer David Greig really taps into the heart-breaking emotional highs and lows of the lives of young carers.
WINNER of BEST ENSEMBLE at The Stage Awards for Acting Excellence 2011.
“An imaginative synthesis of Beauty and the Beast, pop songs, heavy metal, and rapid-fire acting.”
The Independent ****
“Performed at breath-taking speed and simply fizzing with energy”
The Times ****
For more information about Revive MS Support, check out our website. Also, please remember to follow us on Facebook and Twitter.
If you have found this post of interest, the please feel free to share it with your online community via the share buttons below. Thank you.
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