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michele0209

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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 this situation? If mitochondrial disease had a good treatment or cure, I would definitely pursue testing. But the treatment offered is something I can try on my own anyways...vitamins, moderate exercise, rest. I am a 30 year old woman, about to get married and would like children. In my case I feel genetic testing would be more worthwhile, but my doctor said it's not covered by insurance and could cost tens of thousands.
  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. When I sit I feel like my stomach is doing crunches. Standing is very difficult as I don't have my core to stabilize me. It is hard to breathe due to muscle fatigue, yet my lungs and heart have been checked out and are fine. The muscle fatigue eventually causes cramping pain and muscle twitches. I also have stiff leg muscles and some joint pain, but this is tolerable. I am not tired; in fact, I'm energetic...just my muscles are tired. I could do a push up if I wanted to; my muscles just fatigue easily. I have had MRIs of my brain and spinal chord repeatedly, multiple regular EMGs, a single fiber EMG (to test for myasthenia gravis), the autoimmune bloodwork for lupus, myositis, RA, etc with all the antibodies run probably 6 times in the past year, blood testing for thyroid, X rays of my joints, a bone scan, and MRIs of some joints, test for pompe disease, and some preliminary bloodwork for mitochondrial disease. I also have been on high doses of prednisone (60 mg), plaquenil, methotrexate, many anti inflammatory drugs, muscle relaxers and low dose naltrexone with no relief. The doctors have come up with the following: mild POTS with small fiber neuropathy tendonitis/bursitis in both shoulders mild degenerative hip arthritis with a labral tear possible sacroiliitis Fibromyalgia (?) I am repeating the autonomic testing tomorrow because my doctor seems to think this could be responsible for my symptoms. I think my autonomic testing is off because of my muscle fatigue, NOT vice versa. But what can be causing the muscle fatigue? I don't know...does anyone have similar symptoms or ideas of what this could be? Thank you!
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