Stiff Person Syndrome

Posted by peggi @peggi, Wed, Oct 9 9:23pm

I have been diagnosed at UW Hospital in Madison with SPS based on a GAD Ab level of 1451.00 on 11/12/15. Please connect with me.

Hello @peggi — Welcome to Connect. There is another discussion with the same name where your post will receive more visibility and you can meet other members talking about stiff person syndrome. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion with the same name.

> Groups > Brain & Nervous System > Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

After you were diagnosed with SPS did your doctor suggest any therapy or treatment?

REPLY
@johnbishop

Hello @peggi — Welcome to Connect. There is another discussion with the same name where your post will receive more visibility and you can meet other members talking about stiff person syndrome. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion with the same name.

> Groups > Brain & Nervous System > Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

After you were diagnosed with SPS did your doctor suggest any therapy or treatment?

Jump to this post

Yes. I was prescribed Valium 5mg b.i.d. to t.i.d., and IVIg every 4 weeks for a year, then to q6wks. for awhile, then a trial of q7wks., during which time I began having relapsing symptoms; and THEN there was a shortage of immunoglobulin, and I went without treatment for 4 months. Now I am back to being unable to walk without assistance (though I continue to walk 3 miles a day with walking sticks).

I am currently on my way to Madison to see a Neurology Specialist to see what -if any – other treatments are available in the absence of immunoglobulin.

REPLY
@johnbishop

Hello @peggi — Welcome to Connect. There is another discussion with the same name where your post will receive more visibility and you can meet other members talking about stiff person syndrome. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion with the same name.

> Groups > Brain & Nervous System > Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

After you were diagnosed with SPS did your doctor suggest any therapy or treatment?

Jump to this post

Thank you! I would love to compare symptoms with somebody else with SPS.

REPLY
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