SMS Moersch Woltman Syndrome AKA Stiff Man or Stiff Person Syndrome

[Chasity]

Hello, was just wondering if anyone else out there has been diagnosed with stiff man syndrome?

I was diagnosed over 6 years ago after about 1.5 years of bouncing from doctor to doctor. I had a spinal tap and my GAD and ANA titer was elevated and positive. I have been doing relatively good except for what I have lost. Ive gotten very weak, lost alot of mobility, bad muscle spasms, but have managed to keep functioning as normal as I can. I shake and twitch as well, but Iv dealt with it long enough to handle it good. I was wondering if there has been any new treatment breakthroughs besides IVIG, prednisone, baclofen and diazepam? I fight with everything in me and Im still walking even tho I limp sometimes. I keep as active as I can. I handle it very good emotionally, I think that's what keeps me strong and keeps me going. Any others out there with this?

[celeste396]

I have had this 3 years now and doing really well.  I am not progressing as fast as others have, which is great.  I have had problems with diabetes and falling more than anything else.  I always want to keep up with the new info and watch and participate if I can help someone.  Thank you.

[BrookeEliz]

I heard of a new treatment called propofol it has been noted by the Mayo recently and by the UT Southwestern Medical College.

http://www.neurology.org/cgi/content/full/70/18/1584


Apparently there is a baclofen pump that works better than just regular baclofen also, something that I'm not sure of  the details but called the Helmith Treatment.

Also, there may be a correlation between SPS and a mitochondrial deffect or a genetic mutation ....

Have you been checked for heavy metals like mercury, lead, etc. I had mercury poisoning and now have mold poisoning. Also, chronic Candida that is in your blood stream commonly happens to patitents with severe illness like ours. I'd get that checked. If you have that, it intensifies your SPS symptoms.

I also have parasites. I'd check that out. YOu dont have to go to a foreign country to get them. YOu can get them at home or at a restaurant.


I was only diagnosed 1 year ago but i believe I've had it for at least 4 years but someting triggered it and put it into overdrive.

Wholefood supplements that are non toxic have helped as well. BUt for pain and discomfort, magnetic/ionic/infrared products have helped me. I have magnetic bracelets, necklace, shoe inserts, pillow and and infrared comforter. I still wake up feeling crappy but it's the least crappy I've felt in years.  I also use other magnetic things.

The best is the water purification system that detoxes your body and eliminates 99% of chlorine, 98% of lead and other toxins as it keeps the good minerals.  Nikken makes all of the products. I started using them back in May and then by Novemeber I started selling them because I knew from first hand experience that it worked.

I'm not trying to give you a sales pitch...I tru;y belive in these products. If you are interested let me know. I did not intend to advertise so I wont put the info up unless you ask for it.

I'll be praying for ya.

[BrookeEliz]

There is a forum with many people that have been diagnosed on the webiste BrainTalkCommunities. It is free nbut you have to sign up. There is so much info out there and it is great hearing baout other peoples experieinces. It is informative and also sort of a support group.

I have been diagnosed and have been fighting it for a year. I go to the Mayo Clinc next week.

There is just so much info that is not understood by many doctors or undiscovered. It's difficult because no 2 cases are the same. But for me, Valium has worked well and also Physical Therapy. It's just the Health Inusrance that is such a pain. Other alternative methods of treatment have been very helpful for me. But what works for me may not work for you.

Everyone responds so differently to the treatment. I know many ppl that have done the IVIg a few times and it hasn't worked at all. For others, it has a little but they have to  continue it.

Reasearch just needs to keep being done. One day..... we will get the proper and acurate care or cure. Remission would even be nice. I have hope that we can beat this.