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Stiff Person Syndrome: Want to connect with others

Brain & Nervous System | Last Active: Jun 9 10:56pm | Replies (210)
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@sandra319

I was diagnosed a few weeks ago with two gad 65 tests that were higher than 250. The doctor spoke to another who had done iag testing and that was .93 sent to Mayo Clinic now my doctor wants me to do iag testing. I have all the stiff person. Symptoms. Stiffness tripping startle easy stress sets it off. My ivig is on hold I was due to start Monday. He wants iag test done. He ordered 2 gad 65 now is waffling.

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speechless623 | @speechless623 | Nov 14, 2020

I thought SPS was diagnosed more by observation? I had GAD 65 test and results were high so since I do not have Diabetes, my neurologist ordered Lumbar Puncture so he could see the source of Ataxia. A Resident did the Lumbar Puncture but told me he got no spinal fluid (I am overweight and I am told that I must have Lumbar Puncture redone under Guided Fluoroscopy - that is where I am now). I have been diagnosed with Spinal-Cerebellar Ataxia - my doctor is looking for the source of the Ataxia. I have SPS as well. My doctor wants me to have IVEG after he examines my spinal fluid (after successful Lumbar Puncture under Guided Fluoroscopy).

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SusanEllen66 | @SusanEllen66 | Jun 1 1:20am

@sandra319 I’m desperate to compare notes with someone who has been officially diagnosed .

This is what has be happening to me. If I feel the least amount of anxiety, or stress my neck tightens, my entire arm, hand and fingers spasm very quickly. The spasms spread to my other arm, neck, lower back, both legs, and down to my toes. Sometimes my head starts to shake too.
The most fearful time is when I have been standing usually in one place and my back tightens up and becomes very painful. At that point, I MUST SIT DOWN. Terrible pain that causes my voice to change as I cry out. Of course the spasms sometimes don’t show up. After an attack, I am totally exhausted.

Does this sound familiar?

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