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DiscussionStiff Person Syndrome: Want to connect with others
Brain & Nervous System | Last Active: Apr 27 2:40pm | Replies (197)Comment receiving replies
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.
Replies to "To @peggi, I'm a patient. I'm doubtful of my EMG results as well. (I see your..."
I misunderstood your question. I'm not a patient at Mayo. I live near Pittsburgh and so am not close to any Mayo Clinics.
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Interesting to keep reading everyone's responses and issues. I’m one of
those that doesn’t check all h boxes, so besides knowing I have
osteoarthritis and PN. U until recently, my Rheumatologist has even living
my underlying issue an Undiagnosed Autoimmune Disorder. Now that I’ve
found the SS age I’m wondering if I should do back to the Neurologist.
I’ve been to 5, plus two “doctor sparkies” but nothing ever came of it.
The last guy even did a spinal tap.
The one major SPS symptomless that I don’t have is the severe muscle
spasms. I do have what I’d call unintentional movement. This is like when
I hold my arm u with elbow bent and forearm running horizontally, my semi
flexed muscles with twitch randomly. This is not. Cyclical thing like
tremors, it’s random, and occurring more frequently.
I’m in a real bind because i got laid off (position eliminated to reduce
overhead) as a VP from a small civil engineering firm, in June, and still
don’t have a new job. Throughout the summer, my symptoms hve gotten worse -
have to walk s;pow;y with a cane in extreme pain. At 57, I’m not ready to
retire or try to collect disability, but I feel like the cane, age, etc is
knocking me out of he running. Never been in this situation; I’ve
literally had a “real job” every day since the week after my 15th birthday.
Anyhow, sorry for the last paragraph, but it puts things in perspective.
Any thoughts on the neuro vs. rheuma part? Also, does my unintentional
movement match up to anyone else’s symptoms on this page?
Thanks and have a great day! Bryan