ukwildcat Posted February 2, 2013 Report Share Posted February 2, 2013 I went to see RA doctor today, after two positive RA blood test. First she didn't know what Pots or Ncs was. I should have left then. She got up to take I phone call, and I even told my husband "we should just leave". Later, she said RA and EDS were not related to Pots in any way. When I mentioned mast cell I was way over her head and I was the one trying to find out new information. She said that even though I have had two positive RA tests, she didn't know the standards that those test were compared too(one was done by Cleveland clinic and they said my family doctor should do a follow up lab which was also positive, I'm sure Cleveland Clinic doesn't have good standards lol). She wanted me to do new tests, at her lab. When I went to the lab area, I remembered that their labs were not covered by my insurance. I told lab worker that and then she and doctors nurse recommended I go to a different lab. The lab she suggested I go to was where I had the last RA blood test done, a month ago, the one she said she couldn't diagnosis or treat from because she didn't know their standards. I mentioned at the beginning of the appointment that my cardiologist (pots specialist) said she saw signs of hypermobility and possible EDS. The RA doctor questioned, why they would even think that. At the end of the appointment, she said probably hypermobility and possible EDS and joint arthrosis due to joint hypermobility. She was so busy looking at my hands that she wouldn't look at the joints (shoulders, hips, neck, back , knees and tops of feet that hurt me the most). You would think she would have a least looked at those to recommend who to see next if not RA. She said RA almost always shows up in hands first(I guess she doesn't know people with pots don't follow the medical rules).But also she said she couldn't say for sure I don't have RA. It was a useless visit. Hopefully, I don't have RA but no closer to knowing why joints hurt, lock up, and pull out of place. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 2, 2013 Report Share Posted February 2, 2013 I'm sorry your visit was so terrible. We both had rheumy visits today with similar yet different outcomes. Similar being that neither doctor knew too much about EDS or MCAS. The difference is my doctor has been treating me for years and has watched my symptoms progress and has never given up on me. It is so important to find a doctor who truly cares. They are out there. Hang in there. I hope you find a doctor that will give you the answers you seek.Kris Quote Link to comment Share on other sites More sharing options...
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