1. < Brain & Nervous System

Possible Stiff Person Sydrome

Posted by kgraziano @kgraziano, Jan 7, 2024

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, 2024

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, 2024

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, 2024
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, 2024

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, 2024
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?

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

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Nemo1 | @nemo1 | Jan 14, 2024

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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1 reply
peanut61 | @peanut61 | Jun 5 12:29am
In reply to @nemo1 "A neuromuscular doctor could also help you. There are a bunch of tests for SPS. Have..." + (show)
@nemo1

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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Anyone know of SPS specialist other than Scott Newsome at Hopkins? I was referred to him almost 3 years ago (apparently he's the go to doctor for help) unfortunately I was denied being seen because my GAD bloodwork wasn't in the thousands and that's his criteria. So here I am 3 years later in severe shape and once again told I had SPS and to see Dr Newsome
I swear I'm so close to giving up

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1 reply
sheeva888 | @sheeva888 | Jun 6 10:50am
In reply to @peanut61 "Anyone know of SPS specialist other than Scott Newsome at Hopkins? I was referred to him..." + (show)
@peanut61

Anyone know of SPS specialist other than Scott Newsome at Hopkins? I was referred to him almost 3 years ago (apparently he's the go to doctor for help) unfortunately I was denied being seen because my GAD bloodwork wasn't in the thousands and that's his criteria. So here I am 3 years later in severe shape and once again told I had SPS and to see Dr Newsome
I swear I'm so close to giving up

Jump to this post

Hi,
Can you travel to Philadelphia? Dr. Marinos Dalakas is at Jefferson hospital. He has been studying the disease the longest. He used to work at the NIH and is currently running studies.

There is also Dr. Amanda Piquet in Colorado.

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