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Is my wife Margery the only person in the world with this singular MS symptom?

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    Is my wife Margery the only person in the world with this singular MS symptom?

    Hithere

    Myheart goes out to all those people who have 'full on' MS symptoms.

    However,we would really like to know if anyone else out there is having the samesingular symptom as my wife.

    Shewas diagnosed with MS some seventeen years ago when she was thirty following aMRI scan that showed up a lesion in the brain.

    Littleor no problems apart from slight limp since.

    Thena few years ago her left leg starting spasming with increased frequency andincreased pain making sleep very difficult.

    RecentMRI scan show no further lesions in brain or spine and consultant said this wasvery unusual and is reasonably confident that spasms will not spread anyfurther.

    Treatmentoffered is the usual MS drugs but we were wondering if there are any otherpatients with such a similar 'singular sclerosis' and if there are, whattreatment did they have?

    Allcomments gratefully appreciated.

    Kindregards

    Stephenand Margery

    #2
    Hi John and Margery,

    I don't have a "singular" lesion but I have had the same relatively small quantity for about 20 years.
    I have constantly heard from docs -no new lesions, stable. And compared to many others dealing with ms i consider myself to be very fortunate in that my level of disability isn't very severe especially considering i have had ms for over 30 yrs now.

    But i have been researching a lot more in the last few yrs and have learned a lot that i wasn't previously aware of. As well researchers have learned a lot of new info as well.

    For example it is no longer a reliable supposition to say - no new lesions, stable.
    Because although the lesion load used to be the principle way to gauge progression and disability , it is now known that 'white matter damage' isn't the only damage being done.
    In the back ground 'grey matter damage" is occurring and this is now believed to contribute more to overall disability than lesions by some.
    This 'grey matter damage' can cause brain and nerve atrophy and cause the patient to progress despite no visible increase in lesion load.

    If Margery has had ms for 17 yrs plus it is possible that she may be transitioning to spms as well so you may like to discuss this with doc.
    Hope this helps,
    All the best,
    Caroline.

    Comment


      #3
      No, but did he label it spasticity? This is common MS symptom and there are meds that can treat the symptom.

      As far as singular, I would say singular, until it's not. We can hope it doesn't progress, but noone an guarantee it wont. Since it's been mild for 17years, that is a good prognosis.

      Has your wife had a c-spine MRI as well as brain? If not, may be worth getting to see what is going on there.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Hi Stephen:

        Originally posted by stephenjohnpric View Post
        She was diagnosed with MS some seventeen years ago ... Little or no problems apart from slight limp since.
        If your wife has had little to no problems in 17 years, then I'm guessing that she hasn't had a lot of MRIs in that time. While it's possible that your wife has had only one lesion in her brain in all this time, it's also possible that there have been other lesions at other times, but that one has been the only one present at the time of her MRIs so is the only one that was ever captured in an image.

        It's well known that lesions, particularly small ones, can come and go on their own over time. If a person doesn't have MRIs very often, it's possible that small lesions have come and gone over time and were just never present at the time an MRI was done. There's a great online article available that contains time-lapse videos showing how one man's brain lesions waxed and waned over MRIs taken a month apart over the course of a year. Any two of those images taken months apart could have looked essentially the same, leading to the false impression that nothing significant had happened in between them. If the link works properly, you can see it here: http://www.msdiscovery.org/news/news...more-meets-eye.

        Originally posted by stephenjohnpric View Post
        consultant said this wasvery unusual
        Yes, it is very unusual for a person with MS to have only one lesion over a large span of years, but 1) it can happen due to the randomness of MS and the great variability that exists in presentation, and 2) there remains the unknown possibility that there may have been other lesions that have come and gone and never caused any significant symptoms that were never caught on MRI.

        Originally posted by stephenjohnpric View Post
        consultant ... is reasonably confident that spasms will not spread any further
        That's a reasonable assumption based on the one longstanding lesion. If no other significant lesions have shown up over 17 years, there may not be any significant lesions in the future that will cause spasticity. That's not a guarantee, but it's a reasonable assumption to make based on 17 years of history.

        It's also reasonable to assume that that one lesion is acting as lesions do over time and causing more symptoms as the nerves affected by the lesion deteriorate. The continuing decline of the nerve cells can cause new symptoms even though the lesion looks the same on MRI.

        So that part of your wife's history is not unusual -- normal and expected progression of MS (even only one lesion!) over time leading to new symptoms. Even with treatment medications available over the last 15 years, some people with MS still transition to the secondary progressive stage at about 15 years. It sounds like that's what's happening in your wife's case.

        Also, spasticity is very common in people with MS. So your wife's case isn't at all unusual in that respect. It doesn't really matter how many lesions are causing the spasticity or where they are. The treatment options are the same -- medications that include a nerve "quieter," a muscle relaxer, or a combination of both. Other things like physical therapy, judiciously applied heat, or massage can help prevent or relieve some people's spasticity. But spasms that occur at night and affect sleep seem to respond best to the regular and continuous taking of medication so that a steady-state level (as much as possible) can be achieved that will carry the prevention or reduction of spasticity through the night.

        I had one very large spinal cord lesion 15 years ago that has resolved to the point that it's not visible on my MRIs anymore, but the leg spasms -- particularly at night -- have remained. I take baclofen regularly every night to prevent the terrible, painful leg spasms that used to wake me up, sometimes several times a night.

        Your wife's leg spasticity and pain aren't uncommon, and the treatment meds are pretty much the same for everyone. I hope she's able to be successful with one of them and get some relief.

        Comment


          #5
          The link that JR posted is a wonderful video that every MS patient should watch. The way our lesions come and go is amazing.

          But as to a patient being plagued with only one lesion, first there's this entry in
          Wheelchair Kamikaze (a very popular MS blog.) He has only had one lesions and it has not changed in all his years with MS, yet his condition is progressing. Unlike your wife, his lesion
          hasn't changed in all these years. He's had specialist after specialist examine him and MS is the closest diagnosis they can come up with...here's his story:

          http://www.wheelchairkamikaze.com/20...rosis-and.html

          Personally, I have one lesion that is characteristically MS, and takes up a good bit of real estate
          in an area of my brain that isn't very large. But most, if not all, of my symptoms have been linked
          to that one lesion. But there again, in the "snapshots" (MRIs) they've taken over the years, nothing
          ever charges, at least not in the "swatches of time" we've observed my brain.

          I'm off MS meds for the last couple years, and it hasn't affected anything.

          Comment


            #6
            Hello, Stephen and Margery.

            Sounds, sadly, pretty par for the course to me. I've had MS since 1997.
            When diagnosed, I was told if you hadn't had any "bad" (motor not sensory) exacerbations after ten years, you probably had "benign" MS. (Add three years bonus for Beta.)
            I swear, a month after reaching the magic benign number, and thinking yay for me, it went pear-shaped.

            I was walking across the office and my left leg just locked up and my foot started dragging.
            Literally instantly.
            Steroids really worked three times, then I wasn't allowed anymore. It's been slowly, very slowly downhill ever since.

            Trouble with MS - it's always benign until it isn't.

            There are drugs that can help with the symptoms and the disease. You are not alone.

            💐 To you both.

            Comment


              #7
              Originally posted by jreagan70 View Post
              Hi Stephen:


              If your wife has had little to no problems in 17 years, then I'm guessing that she hasn't had a lot of MRIs in that time. While it's possible that your wife has had only one lesion in her brain in all this time, it's also possible that there have been other lesions at other times, but that one has been the only one present at the time of her MRIs so is the only one that was ever captured in an image.

              It's well known that lesions, particularly small ones, can come and go on their own over time. If a person doesn't have MRIs very often, it's possible that small lesions have come and gone over time and were just never present at the time an MRI was done. There's a great online article available that contains time-lapse videos showing how one man's brain lesions waxed and waned over MRIs taken a month apart over the course of a year. Any two of those images taken months apart could have looked essentially the same, leading to the false impression that nothing significant had happened in between them.
              I had one very large spinal cord lesion 15 years ago that has resolved to the point that it's not visible on my MRIs anymore, but the leg spasms -- particularly at night -- have remained. I take baclofen regularly every night to prevent the terrible, painful leg spasms that used to wake me up, sometimes several times a night.
              I have never heard anything like this before. I have had symptoms for years but MRIs didnít show anyhting. I was always told that lesions would be present. Now, Iím questioning clear scans.
              However, Iíve read that having contrast often can actally cause MS. Iím wary of having chemicals injected often. When does a doctor
              determine that an MRI should be done? Is it based on severity of symptoms?

              Comment


                #8
                Originally posted by Bewildered1 View Post
                I have had symptoms for years but MRIs didnít show anyhting. I was always told that lesions would be present. Now, Iím questioning clear scans.
                However, Iíve read that having contrast often can actally cause MS. Iím wary of having chemicals injected often.
                Contrast does not cause Multiple Sclerosis.

                It is important to have blood work to check Kidney function before having contrast. Contrast is filtered out of the body through the Kidneys/urinary tract.

                When having a MRIs with contrast be sure to drink plenty of water before the MRIs, not too much for obvious reasons. After the MRIs are done drink more water as this will flush the contrast out after 1 or 2 times of urinating.

                Multiple Sclerosis literally means many scars. The lesions MS causes is scaring due to demyelination (stripping away Myelin which is the protective coating for our nerves). MRIs are ever changing in MS, there can be more or less lesions and some that are not detectable. If a person has MS there will always be lesions, it's not possible to never have MS type lesions and have this disease, it's just not.

                I was diagnosed a very long time ago. The MRI was fairly new and we had 2 MRI machines in the entire State. My MRIs were clear. My Neurological evaluation, positive Lumbar Puncture, and symptoms gave the clinical picture for MS and I received my diagnosis. I now have lesions and have for many years. Note: There was a different criteria for diagnosing MS at that time.
                Diagnosed 1984
                ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

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