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Mon, Nov 4 6:16pm · Stiff Person Syndrome in Brain & Nervous System

My GAD Ab result was 1,451 at UW Madison, with their normal range <=0.02; and a normal EMG. I do not have any pain whatsoever, no muscle spasms, no startle reflex, no muscle weakness. I REALLY stiffen up when out in the cold, which was never a problem for me before. I used to love skiing, skating, sledding, etc.

I DID have both knees and both hips replaced due to osteoarthritis, and that’s where my thoughts went with the onset of these symptoms — a possible reaction to all of the artificial components in my body. The medical specialists don’t think there is any correlation. Have any of you had joint replacements?

Mon, Nov 4 6:29am · Stiff Person Syndrome in Brain & Nervous System

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

Mon, Nov 4 8:31am · Stiff Person Syndrome in Brain & Nervous System

Suzanne: Thank you for your reassuring response. Yes, I have heard that Mayo physicians take good care of their patients, which is why I asked for a referral.

Sun, Nov 3 4:16pm · Stiff Person Syndrome in Brain & Nervous System

I have been diagnosed with SPS based on a GAD Ab level of 1,451 (standard range at UW Lab <=0.02.!

I have been treated with Valium 5mg. b.i.d. and IVIg q4 weeks, then q6 weeks since Feb of 2016, until the shortage on Feb. 25th of 2019. I began to have more frequent spells, but did not get IVIg again until July 23rd. I am symptomatic, but only outdoor balance issues: No spasms, no pain, no muscle weakness, no problems indoors. I continue to walk 3 miles in 45 minutes with walking sticks, swim a mile in 35 minutes & / or ride a stationary recumbent bike at a THR of 110 for 45 minutes along with 1/2 hour of floor exercises, lift dumbbells, and balance exercises with special balance devices.

Who / what are you? A patient or a mentor?

Sat, Oct 19 10:49am · Having trouble keeping your balance? in Healthy Living

Thank you so much for all of your information. I am so confused, though: I have some similar symptoms, but then I also have some not mentioned. I have no pain, no spasticity; but I’d do get sudden spontaneous shocks up my spine that threaten my balance, and I become very stiff (feel like a statue) when I am chilled. My core shivers. I wonder if I should try to get in to Mayo. My current neurology specialist has only treated one other patient with an elevated GAD Ab titer. O

Wed, Oct 16 11:10am · Having trouble keeping your balance? in Healthy Living

I really appreciate your attentiveness to me, and your attempts to help me. However, no where in this extensive article does it mention SPS, diagnoses with an extremely elevated GAD antibody. I don’t believe any of the diseases or conditions listed are accompanied with that finding. I need to find something that corrects that inhibiting antibody.. and corrects my proprioception, specifically so that I am able to golf.

Wed, Oct 16 8:59am · Having trouble keeping your balance? in Healthy Living

I do not get dizzy/. I can stand perfectly still, but don’t dare try to take any steps, in which case I stiffen up and fall. I just stand there waiting for someone – anyone – to give me an elbow for security. Then my body relaxes and I can walk very easily.

Wed, Oct 16 8:54am · Having trouble keeping your balance? in Healthy Living

I am not experiencing simple balance issues: I get sudden, unprovoked, unexpected static sensations accompanied by rigidity. I have to suddenly force my upper body forward, all the way to placing my hands on the ground or around my ankles, to prevent falling straight over backwards like a statue. This happens when I am standing still, talking to someone.