1. < Brain & Nervous System

Possible Stiff Person Sydrome

Posted by kgraziano @kgraziano, Jan 7 9:27pm

It is hard to get dressed at this point. My legs, feet, arms, hands, lower back, and neck, are all stiff and painful. I’ve been to the ER many times just to be sent home. My white blood cells have been elevated for 4 weeks straight and I keep collapsing, obviously I’m sick with something. I have a Rheumatologist appointment Wednesday. Could it be stiff person syndrome? Or am I crazy for thinking it’s something so rare.

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sheeva888 | @sheeva888 | Jan 8 6:59am

Hi,
You might want to look at the comments in another group on this platform called… “Stiff Person Syndrome: Want to connect with others”. You are not crazy for thinking it could be something rare. I have SPS and am considered atypical because I did not have the GAD antibody or any of the other antibodies.

REPLY
gently | @gently | Jan 8 8:58am

kgraziano,
good that you are seeing a rheumatologist. I'd be guessing autoimmune. You probably won't have to ask for that testing. It's an easy serum draw. Let us know how it goes.
Best wishes

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1 reply
kgraziano | @kgraziano | Jan 8 9:38am
In reply to @gently "kgraziano, good that you are seeing a rheumatologist. I'd be guessing autoimmune. You probably won't have..." + (show)
@gently

kgraziano,
good that you are seeing a rheumatologist. I'd be guessing autoimmune. You probably won't have to ask for that testing. It's an easy serum draw. Let us know how it goes.
Best wishes

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Thank you! I have an autoimmune disease already hoshimotos thyroid.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 8 10:40am

Hi @kgraziano, the conversation that @sheeva888 mentioned is here, https://connect.mayoclinic.org/discussion/stiff-person-syndrome/. Doing some research and going into your upcoming appointment with a good list of questions can often be helpful in your appointments. @kgraziano, have you every met with a rheumatologist in the past?

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1 reply
kgraziano | @kgraziano | Jan 8 11:38am
In reply to @JustinMcClanahan "Hi @kgraziano, the conversation that @sheeva888 mentioned is here, https://connect.mayoclinic.org/discussion/stiff-person-syndrome/. Doing some research and going into..." + (show)
@JustinMcClanahan

Hi @kgraziano, the conversation that @sheeva888 mentioned is here, https://connect.mayoclinic.org/discussion/stiff-person-syndrome/. Doing some research and going into your upcoming appointment with a good list of questions can often be helpful in your appointments. @kgraziano, have you every met with a rheumatologist in the past?

Jump to this post

Thank you for the link. No I have never met with a rheumatologist before.

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Nemo1 | @nemo1 | Jan 14 4:51pm

A neuromuscular doctor could also help you. There are a bunch of tests for SPS. Have you been to a neurologist? On meds for spasms? Ever have a spinal tap? There are other conditions that can wreak havoc with nerves and muscles. I hope you have answers soon.

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