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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’ve had symptoms since early 2016. I have overwhelming stiffness that affects my back, lower legs, and feet and also have muscle weakness. I thought ALS, but had normal EMG tests. I tend to think it could be Primary Lateral Sclerosis, which affects the upper motor neurons rather than ALS (which affects both upper and lower). Often PLS can turn into ALS. PLS can also take years to diagnosis. In late 2017 my neurologist went with SPS based on really high GAD65 blood test (and am being treated with Valium and baclofen). It was over 3000, when normal is 0 to 5. Does anyone else have a SPS diagnosis with normal EMG, but high GAD? I don’t suffer from the extremely painful spasms that are often attributed to SPS. I think my symptoms point more to motor neuron disease, though i’d much rather have SPS. I have mild muscle cramping. I’m not sure if I should go to John’s Hopkins or wait it out and see how it progresses.
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Hello @hsmith801
I have the exact same symptoms you do. With an extremely high GAD 4350. I was diagnosed in 2012 and my symptoms have progressively gotten worse but I do not suffer from painful spasms and cramping is minimal. My main issue is difficulty walking. Stiffness, muscle weakness. I would suggest treating it aggressively now and not waiting till later. I am not a doctor that is just my opinion.
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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?