Quote:
Originally Posted by Intl Trainer
I was just diagnosed with Axonal Senory Neuropathy because of IgM antibodies binding with TS-HDS. I was exposed to some toxic chemicals in my new house 9 months ago and that started this whole journey. I was wondering if there was anyone else out there with this diagnosis. There doesn't seem to be a treatment. This has progressed really fast for me and now I feel burning all over my body, nerve headaches, numbness in legs, malaise, and just feeling neurologically impaired.
I am hanging on to my job by a thread and know that in the coming months I will have to go on STD or try to find a new job. I am sad that my very wonderful and successful career is over. I feel lonely because its hard to talk about this with other people. I am only on LDN as other drugs make me ill. I take a lot of supplements and go to PT. My neurologist is trying to get IVIG approved but since my skin biopsy is negative I am losing hope... I am going to try to pay myself for 3 months to see what happens. An infusion clinic near me is giving me a very reasonable price.
Anyway, I guess I am just wondering if there is anyone else out there...
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I’m the same I think. I also have EDS, MCAS, and SFN, POTS?
I’m still waiting for confirmation but my results for TS-HDS is 19,000 and my norepinephrine levels are high also. I was thinking it was hyperadrenergic POTS, but after reading this I think this might be it. They also are thinking it could be a pheochromocytoma because of my elevated catecholamines and Metanephrines? But I’ll know on Wednesday hopefully! My allergist suggested Hyzentra SQ if IgG is required.