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shadesofgrey49

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About shadesofgrey49

  • Birthday 08/01/1987

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    Floral Park, NY
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    Billy Joel.

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  1. How do you get diagnosed with autonomic neuropathy? I went to Mayo years ago and just got a general POTS diagnosis, but I'm looking into other things now--underlying POTS causes/possible coexisting stuff--including Sjogren's. I was once told I had very high insulin levels, but no one has ever found out why. I have fibromyalgia, and I wonder if there are undiagnosed nerve problems....
  2. Yes! Especially when you're standing around on them. You can't shift your weight or do your adjustments, as you said, on one leg!
  3. Hi all, Long time, no see! I'm wondering if anyone has some advice/sympathy... I sprained my ankle over the weekend and I'm using crutches now. It's super hard on my POTS. Any of you experience this before? I feel like I have very little upper body strength or balance, and using the crutches aggravates all my symptoms and makes the rest of my body hurt more than the injury. I've at least figured out what to replace my normal exercise routine with--aqua aerobics--but I don't think I can do crutches for several weeks. I'm a little unclear on how long I'm supposed to use them...I was getting foggy when the orthopedic was telling me things. I know I'm supposed to wear my brace for two to three weeks, but I feel like maybe I can quit the crutches earlier than that. The office won't call me back. Bah.
  4. When I tried Desmopressin a few months ago, I had my normal water intake (which is probably similar to what Leigh8 is describing), and ended up in the ER with hypovolemia symptoms. I stopped the med, but now I'm worried about my intake and whether I actually retain any electrolytes...
  5. It's so nice to see stuff like this. What's next? What do they do with findings like that?
  6. I've been gaining a lot...So many of my meds cause appetite increase.
  7. Lissy, that sounds like sleep apnea. Thanks guys! I'll keep you posted.
  8. Yea, the old chicken or the egg question.
  9. Hey guys, Have any of you participated in a sleep study? I had one done recently and I'm waiting on the results. I don't think I slept at all and I'm eager to hear if I have a disorder. I imagine sleeping through the night would relieve POTS symptoms??
  10. I'm from Wantagh originally...been up in Albany for a year now. I have a good GP, but no POTS specialist. You?

  11. Hi, I'm in Nassau County.just over the NYC line. I see you are up in Albany. Have a good Dr. up there?

  12. Hi there,

    Where in New York are you from?

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