I asked around at Big Teaching Hospital and got a lead on a newly minted neurologist who is the wife of the nicest new heme-onc. So I got an appointment with her and took her my EMG results, the one which elicited disbelief in Mr. Chief of Department Neurologist. She read them twice with a frown; turns out it's not one kind of damage but many. Her first idea was the Hashimoto's antibodies had damaged various nerves and muscles and symptomatic treatment was most likely the only offer. I insisted that the research is for Hashimoto's neuropathy to resolve when the thyroid is replaced, and mine has been level for eighteen months at least. She considered my suggestion of CIDP because this crap tends to come and go and CIDP is underdiagnosed, linked to both colitis and Hashimoto's by different researchers, and treatable. So she is requesting all my old tests and said she would read them and call me with ideas for further workup. I am going to see Mr. Major Pain in the Ass Rhematologist soon for a followup on the Polyclonal gammopathy and hope to have a request list for him, as I can't afford the deductibles at her sleazy Catholic umbrella organization. A lumbar puncture, which was suggested by Ms. Gorgeous Endocrinologist years ago, may soon be in my future; joy.
Bottom line here; if I had been able to find women specialists from the beginning of this mess, I'd have had a full workup before I got foot drop. Now that I do, maybe some of these women will be on my side for a scientific examination of this bizarre and cruel syndrome. Its latest mean trick? When I stand for a few seconds, get a chill, or feel a little warm, I get a sensation on my hands, feet, arms to the elbow and lower legs to the knee like tiny ants running on me and biting me. Itch and pinch, I guess you would call it. I have to look at the limbs while rubbing them to get it to stop, it's so realistic. So now do I not just stagger like a drunk, I rub like a crackhead. So lovely.
Bottom line here; if I had been able to find women specialists from the beginning of this mess, I'd have had a full workup before I got foot drop. Now that I do, maybe some of these women will be on my side for a scientific examination of this bizarre and cruel syndrome. Its latest mean trick? When I stand for a few seconds, get a chill, or feel a little warm, I get a sensation on my hands, feet, arms to the elbow and lower legs to the knee like tiny ants running on me and biting me. Itch and pinch, I guess you would call it. I have to look at the limbs while rubbing them to get it to stop, it's so realistic. So now do I not just stagger like a drunk, I rub like a crackhead. So lovely.
