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About michele0209

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  1. Hello, So I have a POTS diagnosis, but I think it's secondary to muscle weakness. I feel my heartbeat increase when I'm standing because my body is working extra hard to hold me up. I've been tested for everything, except my neuromuscular doctor thinks it's possible I have mitochondrial disease. She ordered a fresh muscle biopsy but said there's up to a 50% chance there could be a false negative. Another doctor said he's biopsied people with my symptoms before and regretted it because it didn't show anything helpful. I have no organ or cognitive involvement. Anyone have any experience in
  2. For those of you with mitochondrial disease causing your POTS, what has helped with your symptoms the most, especially in relation to muscle weakness?
  3. Yes they did and it was normal. I was thinking mitochondrial disease but my only system affected is my muscles. Plus, I have "flares" of this. There are years when I am completely normal...that's why something autoimmune crosses my mind. So I don't know? My doc said he wouldn't recommend a muscle biopsy because he's made the mistake of doing some on patients like me and they are always normal.
  4. Hello, I am 30 year old female who has been sick for the past year and a half with very debilitating symptoms and I don't know where to turn next. This originally started when I was 16 (had a few very mild flares of symptoms that would eventually go away when I was younger). I live in Chicago and have seen many doctors here as well as spent a week at Mayo Clinic last December. My most debilitating symptom is muscle fatigue, specifically in my upper arms, stomach, chest and back muscles. Feels like my upper arm muscles are dangling from my shoulders about to rip off when I stand up. W
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