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MS-like symptoms for decades, getting worse

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    MS-like symptoms for decades, getting worse

    I have had symptoms, that could indicate MS, since I was a teenager. I have been checked several times by neurologists and I’ve had multiple MRIs. Recent changes in the severity of stmptoms have necessitated another MRI.
    Looking at the threads here, it seems like this is fairly common. I hope to get some feedback and advice from other members.

    #2
    I wanted to wish you well on tests. I hope you get answers. It is frustrating to not know what causes symptoms. I didn't really have that experience, so not much help there. But I know so many on this board share your experience.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      No help from me, either ... sorry! I just wanted to say that I have had 4 (or so??) MRIs in the past and nothing has ever shown up as "MS Specific", although everything points to MS. The neurologist said sooner or later the spots will show up. I'm not sure I like that mindset, but it is what it is.
      Oh yes, she also said she would have already diagnosed me with MS if it weren't for the McDonald Criteria. That was about 7 years ago (???), the first time I saw a neurologist.

      I have taken breaks from doctors over the years - this most recent break has been a few years I think. I get frustrated and figure what's the point anyway if I am not going to take their drugs? At least not yet. I'm ready now to go back and try again. We'll see!!! My symptoms have steadily been worse and worse, and I am nearly convinced it's PPMS. My GP has done 'fifty billion' tests, twice [with about 4 years in between the tests], and still has not found anything.

      It's a bit humbling to go from super active, in shape, "healthy", etc, to needing a cane, needing a wheel chair at times, and all of the other things that go wrong with me. The cognitive side is the worse. I say, put me in a wheel chair for the rest of my life, but please leave my brain alone!

      I just take each day as it comes and am thankful for all of the love and support I have. I pray you get things figured out! It's hard some times being in limbo ... a little bit of closure sure would be nice!

      Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
      Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
      EDSS of 5.5, sometimes 6.0

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        #4
        My suggestion is to find an MS Specialist, rather than a neurologist. Neurologists treat all disorders that involve the brain and the spinal cord. They need to keep abreast of so many neurological illnesses, and MS is just one of them.

        An MS Specialist is a neurologist who specializes in MS. Although they have all of the training of a neurologist, they don't need to focus on keeping up to date on multiple diseases. They can specialize both their training and their practice on MS. They have diagnosed and treated MS countless more times than a general neurologist.

        Your primary care provider can give you a referral to an MS Specialist.

        My neurologist was able to diagnose me, after two years of being in limbo. But, my MS symptoms were somewhat a-typical, and, for the first five years, my MS was also fairly out of control, even while on an MS med. When I switched to an MS Specialist, my neurologist was very supportive, as he believed a specialist could offer me better care than he could.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Originally posted by Mamabug View Post
          My suggestion is to find an MS Specialist, rather than a neurologist. Neurologists treat all disorders that involve the brain and the spinal cord. They need to keep abreast of so many neurological illnesses, and MS is just one of them.

          An MS Specialist is a neurologist who specializes in MS. Although they have all of the training of a neurologist, they don't need to focus on keeping up to date on multiple diseases. They can specialize both their training and their practice on MS. They have diagnosed and treated MS countless more times than a general neurologist.

          Your primary care provider can give you a referral to an MS Specialist.

          My neurologist was able to diagnose me, after two years of being in limbo. But, my MS symptoms were somewhat a-typical, and, for the first five years, my MS was also fairly out of control, even while on an MS med. When I switched to an MS Specialist, my neurologist was very supportive, as he believed a specialist could offer me better care than he could.
          I know this isn't my thread, but I just wanted to say your comment was encouraging to me I'm going to take your advice and get an MS specialist instead of a general neurologist ... as soon as I get insurance. The neuro I was with the longest was part of a neurologist team that included one MS specialist. She did consult with him after each visit, but I think I need more than that. The closest one is 3 hours away - but I have a friend that's willing to cart me around as needed.

          Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
          Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
          EDSS of 5.5, sometimes 6.0

          Comment


            #6
            Originally posted by jjs View Post
            I know this isn't my thread, but I just wanted to say your comment was encouraging to me I'm going to take your advice and get an MS specialist instead of a general neurologist ... as soon as I get insurance. The neuro I was with the longest was part of a neurologist team that included one MS specialist. She did consult with him after each visit, but I think I need more than that. The closest one is 3 hours away - but I have a friend that's willing to cart me around as needed.
            I'm glad you were encouraged. Mine is also 3 hours away. But my husband takes a sick day, we schedule it on a Friday, stay overnight, and make a mini weekend out of it twice a year.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment

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