Discussions By Condition: Nerve conditions

stiffmans syndrome

Posted In: Nerve conditions 3 Replies
  • Posted By: Anonymous
  • September 15, 2006
  • 11:41 AM

Hello all,

I have been 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, I started out with a complaint of chronic back pain from which I only got partial releif of the aching if I were to lay down, I saw a chiropractor for extended periods of time with no real relief and so much more to tell.

I was thought to have possible pinched nerve, MS,lupus,Lyme Disease, ALS and others 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, or cure I am currently being treated with Baclofen and Vicoden which gives me 80% relief from symptoms....but does not improve my balance or gait.

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

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3 Replies:

  • Hello,I just got back from the national istitute of health. There is a chance I may have Stiffman's Syndrome. I was tested once and it was negative. A clinical trial was just completed that has not yet been published. There are apparently more anti-bodies found in persons that have stiffmans syndrome. They are sending by blood tests to the Mayo Clinic to see if I test positive for any of these new anti-bodies. Also, the clinical trial was for two new drugs for the treatment of Stiffman's. One was proven to help. You may want your Neuro to look into this. My symptoms are not as many as yours. I do have ringing in the ears. However, there are a number of reasons that could cause that. My main symtoms is stiffness in my legs. When I get nervous for any reason, I sort of get a small jolt and my legs and completely stiff and I have no balance whatsoever. I can just fall in place. It is so weird. I do not have any pain associated with the stiffness. Good luck to you. If you want to e-mail me, please feel free to do so. My e-mails is marketing1995@aol.com.God BlessMary Kay
    Anonymous 42789 Replies
    • November 10, 2006
    • 03:57 PM
    • 0
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  • Hello: I am so sorry for you. I have not been diagnosed, but my step-dad has. It has been horrible to watch him. Now that I think of it he had ringing in his ears, pain is his back, everything you said. It has taken 3 years to get a diagnosis for him.I'm not sure where you are from, but we are in Ontario, Canada. There arent many occurences of this disease I guess. He too was tested for ALS, MS, you name it, he was tested. My step dad has a pump inserted in his abdomen which gives him baclofen to help with the spasms. If you ever want to talk, or let me know how you are feeling, please e-mail memelanie_zaluski@hotmail.com I hope you are doing well, and god bless.
    MelanieZ 5 Replies
    • January 30, 2007
    • 04:37 PM
    • 0
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  • I have had a lot of experience and research with regard to nervous system autoimmune diseases. After four years of searching I was finally diagnosed with the seemingly ambiguous term "cramping and fasciculation syndrome."I have been a guinea pig for many kinds of treatments and drugs and after my own experience and my extensive research I have come to some conclusions that might help you and others with similar autoimmune diseases.First, get an antibody panel done that includes GAD and VGPC antibody tests. If it comes back negative (normal), then get it done again. It's expensive ($500) but worth it. Without results you won't get in the front door with the doctors who can make a diagnosis and prescribe treatment. Never trust just one test as it can get messed up (as my first one was). Also, the antibodies might not be in the blood stream at the time the blood was taken for the test, but they are still present in the body (at work on the nervous system).Second, get plasmapheresis. This process strips the body of antibodies. The most effective way is to check into the hospital for five consecutive days of pheresis. Others have had success with antibody infusions (IVIG) or antibody replacement (plasma exchange). These should be followed up with some type of immune therapy such as steroids and Imuran or Cellcept.
    Anonymous 42789 Replies
    • December 18, 2007
    • 04:21 PM
    • 0
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