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Posts (5)

Dec 11, 2019 · Paralysis,anemia, chronic pain, stroke, and no diagnoses. in Brain & Nervous System

What kind of explanation was given about the lump? Hopefully that explains the paralysis and drop foot.

Nov 4, 2019 · Stiff Person Syndrome in Brain & Nervous System

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.

Nov 4, 2019 · Stiff Person Syndrome in Brain & Nervous System

I misunderstood your question. I'm not a patient at Mayo. I live near Pittsburgh and so am not close to any Mayo Clinics.

Nov 2, 2019 · Stiff Person Syndrome in Brain & Nervous System

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.

Nov 2, 2019 · Stiff Person Syndrome in Brain & Nervous System

Sometimes, rarely, SPS is triggered by tumors that is why the neurologist refered you to a cancer specialist. If the tumor was taken care of, then SPS would likely go away.