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Stiff Person Syndrome: Want to connect with others

Brain & Nervous System | Last Active: 1 day ago | Replies (211)
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@sheeva888

The Stiff Person Syndrome Research Foundation (SPSRF) is a great resource. Based out of Bethesda, MD. Tara Zier sees Dr. Scott Newsome at John’s Hopkins.

Also, you could check out the NIH and NORD websites. As well as searches for medical articles on PubMed and Google Scholar.

I see Dr. Marinos Dalakas at Thomas Jefferson University Hospital in Philadelphia, PA. He is one of the doctors on the foundation’s medical advisory board. He has been studying SPS for a very long time and continues to. He has published many studies over the years.

I am currently taking diazepam, Baclofen, Gabapentin and monthly IVIg infusions in-home (3 days in a row each time). I also use medical marijuana for anxiety and to help take the edge off the pain. I practice my own physical therapy (low impact exercises, stretching, some yoga poses) at home or walk outside when possible. Pool exercises are good in the summer. I find hot tubs, saunas, steam rooms and epsom salt sensory Deprivation floats to be helpful. Of course I have heating pads, vests, and wraps all over the house.

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Replies to "The Stiff Person Syndrome Research Foundation (SPSRF) is a great resource. Based out of Bethesda, MD...."
ess77 - Elizabeth | @ess77 | Aug 12, 2023

@sheeva888, and all...Thanks so much! Great info for us. May I ask about the IVIG infusions...I had them several years ago in 3-day sessions as well, for what was believed to be Myasthenia Gravis. I don't have it, but do have double vision and other symptoms. The infusions actually helped me a lot even though not for MG. What are they using them for in your treatment? Helpful? How?

Also, is Gabapentin helping you and why are they using it for you? I also took it for years for pain and such. I'm off it thankfully, as it caused brain fog and some other issues, but I was grateful for the drug. It makes sense for my son to take it as it addresses nerves directly and his new doc mentioned he may try it.

I was also on Lyrica and several other heavier drugs that I'm now tapered off for a couple of years. I deal with pain with Medical Marijuana, as does my son, and steroid cream/Voltarin/magnesium creams....using more topical medications now to avoid my gut and absorption issues. With Robaxin, Duloxitine, Xanax, and CBD gummies. A good cocktail of various types of relief...(no alcohol.)

Thanks again and be well, be blessed...Elizabeth

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