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  • stiffmans syndrome

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    Old 09-13-2006, 08:37 PM   #1
    stiff person
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    stiffmans syndrome

    Hello all,

    I am searching high and low for others who have been diagnosed with SMS. I would like to know more about this disease in real life terms, as opposed to what I read on the Net.

    My symptoms range from ringing in the ears, sharp shooting/stabbing pains, electric painful spasms, vision disturbances, pain & Stiff ness, gait/balance problems, muscle weakness, Abnormal posture (lordosis) Hyper startle reflex and more.

    I was thought to have MS but after several MRI's, EMG's, and the other neuro test....I was found to have elevated GAD antibodies....and given the wierd diagnosis of Stiff mans syndrome, aka Stiff persons syndrome, aka Moersch Woltman syndrome.

    This is thought to be an autoimmune disorder. SMS is a chronic, progressive (variable) disorder of the central nervous system having no known cause. I am currently being treated with Baclofen and Vicoden which gives me 80% relief from symptoms....

    IS there any one else out there who can share anything with me?

    Last edited by stiff person; 09-13-2006 at 08:47 PM.

     
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    Old 09-14-2006, 08:35 PM   #2
    NHone
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    Re: stiffmans syndrome

    You could easily have low magnesium which could cause all of those problems. A normal serum is of no value to tell you the magnesium content of yours cells. Magnesium is mainly intracellular. Spectracell in Houston can do the intracellular test, as well as many large hospitals. The problem is most doctors know nothing of magnesium, specificly that it is intracellular. By the way, my mother had all the problems you had, and they did a specific test for SMS....they decided that instead she had cerebellar ataxia...that turned out to be incorrect also. On our own we found that she was low in intracellular magnesium. Her problems resolved.

     
    Old 09-22-2006, 08:50 PM   #3
    stiff person
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    Re: stiffmans syndrome

    Dr. said my magnesium was normal....but my GAD antibodies were 2911.7 I dont have diabetes. the SMS has been my only diagnosis.

     
    Old 12-18-2007, 07:45 AM   #4
    jmyers
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    Re: stiffmans syndrome

    Don't know if you are still looking at this message board, but for you or anyone else who is looking for answers in this category, I think I can help. For four years I searched for an answer to my condition and have done many, many hours of research and have been a guinea pig for various procedures and drugs.

    Initially triggered by a spider bite, I began having stabbing pains, muscle spasms, cramping, muscle twitching, fasciculations and painful areas like deep bruising that spread from one area of my hip to cover my entire body. It is constant torment and it has been bad enough at times to rate "suicidal."

    After Mayo, Baylor College of medicine, multiple muscle tests and two antibody panels we finally discovered that I had VGPC (Voltage-gated Potassium Channel) antibodies. My doctor calls what I have "cramping and fasciculation syndrome" but in my research I have found that neurologists tend to interchange this name with Isaac's Syndrome and Neuromyotonia (and there is some disagreement about the definition of those terms) and sometimes even Stiffmans.

    If diagnosed early enough in the disease cycle, a person can usually be cured by plasmapheresis, but WITHOUT an exchange for other antibodies. Neurologists tend to rely heavily on antibody infusions or exchanges for treatments of this and similar autoimmune diseases, but in my own experience and actual studies, such treatment tends to aggravate instead of help the condition.

    I was diagnosed too late in the process and now am considered "incurable." I tried plasmapheresis (5 days in hospital) and it helped for about 6 weeks, but then the disease came roaring back. Subsequent tries couldn't keep up with my increased antibody production.

    Now I am trying immune suppression therapy in addition to taking 450mg Lyrica (the only drug so far to have helped me in any significant way). I have tried Imuran, but after six months saw no improvement. Now I am on CellCept. If this is unsuccessful after six months we will give up on treatment and control and go strictly for pain relief.

    If you have been diagnosed with Stiffmans, Isaacs, neuromyotonia, cramping and fasciculation or your doctors have still not diagnosed you, but you have similar symptoms to these and related diseases, you need to get an antibody panel (and I would suggest keep doing it until you get results) and get plasmapheresis as soon as possible.

     
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