My PT and I thought it was an inflamed tendon on the palm of my left hand. Not sore, but protruding noticeably at the base of the thumb. I only mentioned it in passing at the end of one of my regular rheumatology appointments, more as a curiosity than anything. She took a look at it, poked a little, did a few basic strength checks then said it was wasting with weakness.
My hands had been changing for a few months prior, but again, while mentioning it to doctors it was never the headline so to say.
Two NCVs, an EMG, MRIs of both hands, full spinal MRI, brain MRI, a QST, additional blood testing for MG, a few checks of CK, full autoimmune panels yet again. A referral to a regular Neurologist and a Neuromuscular specialist and just today an appointment for a second opinion from another Rheumatologist. All normal enough. Normal NCV, normal enough EMG, no arthritic changes, no entrapments, no radiculopathies.
I haven't been leading this charge. It's all been at the instigation of my primary Rheumy and GP. The atrophy has extended in both hands with corresponding weakness, but as it stands now, it's idiopathic. The left hand is still ahead of the right. My doctors concerns are now more consternation and confounded.
Time to get off the merry-go-round. No more specialist except to medically manage me off my current meds to an absolute minimum.
I have a follow up with the Neuromuscular specialist in late May after a scheduled sfEMG. My instinct is to cancel both the appointment and the test. I'll be putting a call in to her next week to ask if she feels it truly is medically justified.
I sincerely intend this to be the last thread I start on this site. I might comment occasionally in dihals threads just to point out that weird stuff happens and to whip your head into shape. Another new thread? Bad news or something awesome.
Do I think I have ALS? As so many of you would say, clean EMG = no ALS. There have been a few other clinical symptoms, but that's not what this post is about. Do I think there is something happening beyond my Ankylosing Spondylitis? Yep... But that don't matter at this point either.
Time... Time to get back to something normative and time to find someplace to do some volunteering. But now? I'm going on a holiday from doctors.