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My Undiagnosed Saga

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    My Undiagnosed Saga

    Hello everyone!

    My symptoms started about 2 years ago, at the age of 59. Until that time, I was an avid bicyclist, hiker and enjoyed skiing in the winter. Two years later, I can barely move and have gained 50 pounds from inactivity.

    Everything started when I could not lift my left leg. My doctor said it must be my hip, but x-rays showed no arthritis. She sent me to see a physical medicine doctor. She performed a nerve induction test on my leg, which was fine, so nothing peripheral. But, she said their was something wrong with my reflexes and sent me to a neurologist. He tested my reflexes and said I had hyperreflexia and asked me if I dropped things, had clumsiness or felt a shocking sensation when I tilted my head back. I don't get the shocking thing, but my upper mouth gets numb sometimes. As for the dropping things, I have been diagnosed with carpal tunnel in both hands, so I thought it was that. But, my right hand also contracts on its own into a claw and I can't move it. I don't think that is carpal tunnel. My primary care physician has never seen it. She said it is not trigger finger.

    Anyway, I was sent for MRIs with contrast. During the brain MRI, the radiologist said he saw enough and didn't need contrast. This showed juxtacortical white matter lesions, but only in that area, so he said no MS. I was under the impression that you needed contrast to see newer lesions, but he just bypassed that part of the exam. My spinal cord was fine and no contrast was done there either. The doctor's office phoned back, said no MS and didn't schedule another appointment. Then the Dr left for another position.

    It has now been a year since the MRIs. My feet go numb, I still have problems lifting my leg. Climbing stairs has to be done one step at a time, using my right leg to step up. I get severe muscle cramping/spasms and they stay locked up, particularly my left hamstring and the outside of my calf. When I lie down, I cannot bring my legs up at all. I used to lay like that to help with lower back time. This becomes bearable at bedtime when I take 8mg of tizanadine. In the morning, I can bend my legs but it will be back to normal within a few hours. I have facet joint arthritis in my back, but there is no nerve impingement anywhere and no bulging discs.

    Last year, on a trip to California, I developed Rosacea. This is also brand new. My doctor has not checked for autoimmune diseases because I have Reynaud's Syndrome and would just test positive.

    Sometimes, my muscle contractions just leave me sore for days and I have to phone in sick to work. I take hydrocodone three times a day for pain. I used to take meloxicam, but the NSAIDS are killing my kidneys. My latest blood work is normal, except for my kidney function. Blood sugar is good, no infection, no deficiencies.

    I'm at a loss. My husband is going crazy. All I can think about is finding another neurologist and seeing what he/she says. I'm not sure if these are MS symptoms or not. I can't stand long enough to cook dinner anymore. I do everything in phases. Chop stuff, sit down for a while. Start cooking, then sit down again. It's just very frustrating. Thanks for listening.

    #2
    Hi Scrapula and Welcome

    Sorry to learn that you've been having so many symptoms, and yet no explanation for them.

    Originally posted by Scrapula View Post
    All I can think about is finding another neurologist and seeing what he/she says.
    Yes, finding another neurologist is a great idea. You need to find out what is going on with your body.

    Wish I could offer more suggestions, but for now it seems that you need more thorough testing.

    Good luck and hope you get some answers!

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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      #3
      Hi Scrapula,

      I was under the impression that you needed contrast to see newer lesions
      A MRI without contrast will show the same lesions with contrast. The only thing contrast does is "light up" lesions that are currently active (inflammation).

      It would probably be a good idea to see a Neurologist and have new MRIs done.
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Agree with everyone else - definitely go see a new neurologist. You do need to find answers, MS or not. Just a warning, you will probably hear you need to take the weight off, as it may be complicating symptoms. I know from personal experience!

        I hope you find some relief, along with answers.
        Kathy
        DX 01/06, currently on Tysabri

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