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DiscussionStiff Person Syndrome: Want to connect with others
Brain & Nervous System | Last Active: Aug 12, 2023 | Replies (196)Comment receiving replies
Suzanne, I also have stiff persons syndrome. I was just diagnosed last summer. I don't have it too bad as it just occasionally effects my left leg and mid-section to where I stiffen up. I am now taking medicine for that but I also tried IVIG and I don't think it helped. My biggest problem is I can't walk through parking lots, or even walk outside without some kind of assistance and I get kind of dizzy and scared. I also tend to have a problem when walking in front of other people unless I have my cane or walker with me. I didn't know if this disease tends to get worse or not. I do much better in the summer it seems than in the winter. I just can't even walk down the sidewalk on my own, however I can walk in my own home and my office without any assistance. Makes no sense to me. I am on an anti-anxiety drug but it doesn't seem to help this part of it. I guess I'm lucky as I don't have pain.
Replies to "Suzanne, I also have stiff persons syndrome. I was just diagnosed last summer. I don't have..."
You describe almost exactly my symptoms. I've had it for more than 20 years. Was finally given a tentative diagnosis in 2008 based on my symptoms and EMG. Basically, everything else was ruled out. I know people wonder why I use a walker when I generally walk pretty well, but if you take it away (unless I'm at home with a cane) I stiffen and cannot walk. I retired in 2008 and my symptoms are much better due to less stress but I'm afraid I will never get away from the walker.
To @nutmeg: Your symptoms sound exactly like mine. I walk with walking sticks when I go for a walk, because I can’t do curbs, slanted surfaces, or gravel. I can motor on sidewalks, but am afraid to go without my walking sticks because of the possibility of the above obstacles.
I had a “negative “ EMG, but am questioning that answer: Twice during the procedure , my left thigh tightened to the point where I could not lift my leg. The tech and doctor were at my ankle level both times. I reported the spasm, but they ignored me both times and just continued the procedure.
I DO have an appointment at Mayo in Rochester this Wednesday, November 5th, and am very hopeful that I get a doctor who listens, is empathetic, and cares about what is happening to me.
Please reply to me. I really hope we can get help: I really want to golf, but that really throws me off balance.
From Peggy
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jHi Nutmeg, These are not problems that my husband has mentioned to me, so I don't have experience with them. I sure hope that you can find answers and relief. My husband says that changes in the weather and temperature affect his symptoms. He does get dizziness sometimes, but that might be inner ear disorder and not Stiff Person Syndrome. I don't know, I'm not a doctor, but just trying to help.