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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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@SusanEllen66

@sheeva888 I just re-read your list again. I checked our weather for the week, and it will be between 104-109 degrees. I could just sit on the patio for the light and heat therapy!
Kidding aside, I have inflamed arteries (Vasculitis), and fibromyalgia. Some of the things wouldn’t work for me unfortunately .

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Replies to "@sheeva888 I just re-read your list again. I checked our weather for the week, and it..."
sheeva888 | @sheeva888 | Jun 4 6:47am

Ha! Being in warmer climates definitely seems helpful for SPS patients but the sun doesn’t penetrate the muscles like other heat modalities. Some people find Botox injections and/or acupuncture are helpful, but they don’t work for me. You probably need a diagnosis for Botox but not for acupuncture.

FYI-My EMG was negative and my GAD 65 was negative, so I was initially diagnosed with atypical, classical SPS. Basically I exhibited all of the symptoms and responded to Valium. Many other conditions were ruled out and tests were negative. But I am now positive for GAD. My level was 0 in 2019 at diagnosis and is now 230 (Elisa test).

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