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Hematologist suspects AI, can't see Rheumatologist for about 2 months or more. Need advice.

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Rach1108
Rach1108

Hematologist suspects AI, possible Vascultis or Lupus or Schleroderma.

I can't see Rheumatologist for about 2 months or more. Need advice, as hematologist will not prescribe anything for me but the leg pain is bothersome and I have tried OTC pain meds, some old muscle relaxers I have in the cabinet, even THC gummies, I am taking tumeric, vitamin D3, flax seed, fish oil, COQ10, a Probiotic and a B complex. Nothing is helping with pain or this odd overall feeling of pins/needles, inner coldness, pain.

  1. Any one else have any similar symptoms and results?
  2. Are all doctors so backed up right now that it takes months to be seen?
  3. How do I know if I need to be seen sooner than the rheumatologist can get me in?
  4. How do I know if I need to go to the ER, like if whatever this is is progressing and causing damage or would they even know how to help me?
  5. What can I do to help calm these symptoms down?

Positive ANA, fluctuating platelets, high Anticardiolipin Ab,IgM,Qn (but not severely high)

Awaiting results for ANCA (another 1-2 weeks)

  • Have always had leg pain and odd pressure from lower abdomen down.
  • Started with low platelets early January, that dropped for a few months but has gone back up some now.
  • Petechiae on abdomen in March, still there.
  • Developed livedo reticularis in arms and legs in later March, with pins and needles sensation in arms and legs, with cold sensation to where it feels like ice water in veins (or the really cold feeling you get when you chew super minty gum).
  • Constant leg pain, with some arm pain. If I am doing my hair my arms get tired easily.
  • Fatigued and overall sense of not being well most times.
  • Shortness of breath.
  • Had what I believe to be an intense flare up a few weeks ago, it was all of the above but just super intense, I even cried.
  • I am now noticing the livedo reticularis also in my feet and on upper abdomen, in addition to legs and arms.
  • I am also all over cold on the outside now. Like today it's 72, I am working from home in feet pjs and at one point had on a robe, slippers and gloves too.

Thanks for listening!!

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