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DiscussionStiff Person Syndrome: Want to connect with others
Brain & Nervous System | Last Active: Jun 9 10:56pm | Replies (210)Comment receiving replies
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?
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To @peggi, I'm a patient. I'm doubtful of my EMG results as well. (I see your response to @nutmeg.) Before I had the first one, the doctor told me I don't have ALS, just looking at me, not even having had a neurological exam either. Then as the test began, he appeared to look really serious. It is tough to know if he was lying to me afterwards about it being normal because he didn't want to be wrong. I've developed a lot of distrust for neurologist after this because going for second and third opinions, I believe they rely heavily on the opinions of prior doctors. The second EMG at the same practice, but a different doctor, she kept reinserting needles into my back muscles until she found a good reading!! I figure I have to wait it out and go with the only understanding neurologists I found who went with the SPS because all the others seem useless. Or else go to experts in SPS at John's Hopkins and see what they believe about a SPS diagnosis.