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Thankyou so much! I have done so much research and I think this is what I have. Probably brought on by Covid. Have you tried IVIG or anything that has helped at all. I forget to mention in my post that I can feel hot, cold and touch on the outside of my torso, but my insides are numb. I am thinking that could possibly be small fiber neuropathy too. The Doctors look at me like I am making it up when I tell them that symptom. I am still trying to figure out how this happened to me.
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@j77
I believe you know exactly what you are talking about, no matter how the Western Med Prof looks at you. But you most likely had this autoimmune, then COVID attacked you and really brought it to the surface.
I have such a long story I couldn't begin to tell you about my Long COVID beginning in late '23, just now been told, COPD. I believe I've always had an autoimmune, Sjogren's, misdiagnosed in the '80s by a Rheumatologist, telling me I had Lupus/ Arthritis. (Often a false positive Dx. )
I have now been diagnosed by pulmonology test and a Pulmonologist who refuses to believe in LONG COVID, they're determined I have COPD, suddenly developed months after COVID.
no lung or smoking or other relative Hx.
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I am on IVIG not given right by the doctor. Every 3 months 5 times a day. When I took it previously every two weeks. The panzyga I take last only two weeks. Then I get dizziness, balance problems with my motor neuropathy my hands start shaking worse.