Due to an allergic reaction to the preservatives/stabilizers in the PPD Tuberculin Test 3 months ago, I ended up in the hospital in serious condition for a total of 14 days and am still sick. Besides fatigue, muscle weakness and other symptoms, I have developed cyanosis and mottling of my hands/fingers/feet/toes. They are cold like ice and can get so bad that they look almost black. The mottling is now extending to my wrists and up my forearms. The Immunologist suspected dematomyositis/Gottron's Papules, so my PCP sent me to a Rheumatologist who did extensive testing on me for autoimmune diseases, as well as Lyme disease and B-12 deficiency. All came up negative or normal and it's not Raynaud's either. He also sent me for an Upper Extremity Arterial Vascular Ultrasound but circulation tested normal which I find hard to believe given the severity. He then sent me for an EMG/NCS of my lower extremities to follow up on the muscle weakness. That revealed a right common motor neuropathy at the branch EDB, so he ordered one last blood test for a neuromuscular autoimmune disease (Myasthenia Gravis) but it was negative too.
The Rheumatologist said to follow up with my PCP to see what other specialists might be appropriate but my PCP is stumped and doesn't know who else to send me to except maybe a Vascular surgeon. Any thoughts, insights, direction??? This has been a very frustrating rough 3 months. I'm wondering if I should consider going to the Mayo or Cleveland Clinics since they are noted for finding rare conditions.
Thanks for that suggestion. I looked it up and the blood test for it was already done on me and was normal
If you have any other suggestions I welcome them. Called my Immunologist yesterday and talked to his nurse about my symptoms, as well as faxing a copy of my original post here. She was very concerned. I will be getting a call from her sometime Monday. The Immunologist was the one who identified the problems in the first place, so I'm optimistic that he will track it down.
Thanks again. I went and researched it and am happy to report that nothing I'm taking has that in it. I am going to see a Vascular Specialist on the 31st who has extensive training and experience as well as published a number of articles in medical journals. I read some of the abstracts from them. I've been told he doesn't have much of a personality (surgeons generally don't) but he's good at what he does and that's what I care most about. I'll get him to talk to me.
Thanks and I'll post when I get more answers. It's not fun being what drs call an "interesting, unique, wierd" patient. Few want to spend the time tracking down rare conditions. Hopefully the vascular guy can make some heads or tails out of whatever "it" is that I have.
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