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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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@ellenanne33

All therapies have not help my husband 1st responder fdny on 9/11 and plance crash soon after that went down in the rockaways queens ny .he has has ivig ,plasmapharesis ,rituxamab and last cytoxan only to have multiple pneumonias and sepsis and now back in hospital for clots in lungs .any help out there .much appreciated as nyc has been no help at all !!

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Replies to "All therapies have not help my husband 1st responder fdny on 9/11 and plance crash soon..."
SusanEllen66 | @SusanEllen66 | Jun 3 10:30pm

@ellenanne33
I am so sorry to hear about your husband.

Neurologists who specialize in movement disorders have a 7 month wait for an appointment…I’m stunned! I can’t wait that long…

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sheeva888 | @sheeva888 | Jun 4 6:33am

Hi,
Have you checked out clinicaltrials.gov to see if there is anything active he qualifies for? I know a SPS patient that just went through a stem cell trial in Colorado. I have heard a few others are possibly signing up. I don’t know where you live, but my neurologist has been doing research on some alternative IV therapies for patients not responding to the typical ones you listed. He used to work at the NIH. He does see patients from other states for 2nd opinions.

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