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Old 11-14-2020, 06:41 AM #14
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Join Date: Jul 2020
Posts: 10
3 yr Member
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
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Almost all of the tests (EMG/NCS/F-Wave upper and lower, FANA, RF, SS-A & SS-B, ds-DNA, CK, Paraneoplastic Antibody, T4, TSH) came back normal, ruling out basically everything my neurologist thought it could be but my symptoms are getting worse.

I wake up with numb hands, and sometimes they get numb during the day, my erythromelalgia is flaring on my face all the time, I struggle to hold up a book when reading to my students and have to constantly switch arms, have difficulty keeping my arm up when writing on the board, am exhausted constantly but can't sleep, and have pain and fatigue in my calves constantly. I'm just so tired and feel so terrible and all I want is answers but every possibility keeps being ruled out.

The only abnormalities were a positive ANCA (it says C-Type 1:80, though I don't know what that means), slightly elevated T3, and slightly low Lupus Anticoagulant Screening.

My neurologist told me that the positive ANCA could be a false positive but if it isn't then it could be indicative of mixed connective tissue disease. I tried looking it up online but all I found was a possibility of vasculitis, not mixed connective tissue disease, so I'm a little confused.

She also basically told me that if it's a false positive then I may never have answers, that she has no idea. But she is referring me to a rheumatologist who may order more tests including the tests to see if the ANCA is a false positive. Unfortunately that appointment isn't for ANOTHER two months so I continue to be stuck in limbo indefinitely.
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