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Stiff Person Syndrome: Want to connect with others

Brain & Nervous System | Last Active: Aug 12, 2023 | Replies (196)
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@speechless623

John - Thank you very much for this information. My Doctor did GADS 65 test on me, results were high so he wants to do Lumbar Puncture so he can have Spinal Fluid tested to see where the Ataxia is coming from. Then he wants me to have IVEG. Do you have information on IVEG (safety, effectiveness-anything I should know)?

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Replies to "John - Thank you very much for this information. My Doctor did GADS 65 test on..."
John, Volunteer Mentor | @johnbishop | Nov 14, 2020

@speechless623 - I have no experience with IVIG treatment for stiff person syndrome but here are a few articles you might find helpful.

- "Most adverse effects are mild and transient including headaches, flushing, fever, chills, fatigue, nausea, diarrhea, blood pressure changes and tachycardia." - Safety of intravenous immunoglobulin (IVIG) therapy: https://pubmed.ncbi.nlm.nih.gov/17317619/

- (2019) New Thinking on Stiff Person Syndrome -- Or Is It Syndromes?: https://www.medpagetoday.com/meetingcoverage/aan/79664

- "Dec 22, 2015 — Stiff Person Syndrome (SPS) is one of the rarest autoimmune ... IVIG and plasmapheresis are either used alone or in combination in refractory ..." - Recent Advances and Review on Treatment of Stiff Person Syndrome in Adults and Pediatric Patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727915/

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