Help! New Rheum!
I'm on my 3rd Rheumatologist due to insurance issues.
1st Rheum said I have seropositive RA after about a year of testing and observation & checking inflammation, looking at my joints, etc, and calling it anything from unknown autoimmune disorder, to potentially RA, to finally RA
2nd Rheum said I have seroNEGATIVE RA, says the tests my 1st Rheum did weren't the good tests, he thinks I have seroNegative, about 8 months of testing and observation.
3rd Rheum, 1st visit: no exam, just ordered labs & imaging.
2nd visit (today) no exam, said I have nothing wrong with me and should just go to a pain management clinic. He has no idea why anyone has ever told me I have RA, as there is clearly nothing wrong with my immune system, or my joints. I said - but what about all the swelling in my hands and feet? He said, 'it's soft tissue swelling' and shrugged. And sent me home.
Now I don't know what to do. My insurance will say, based on him, that I don't need a dr anymore! *panic* If this is true, then what has been going on these past 2 years!?!? If it's not true, how do I find out? Ideas welcome.
So just to update, my 1st rheumatologist diagnosed me as seropositive based on elevated ANA, elevated anti-car-P antibodies, SED over 100, and heat/red/swelling in knuckles and feet that had persisted for 6 months at that time, has been 2 years now, responded to prednisone, and also responded to enbrel for about a month and then stopped.
Most recent labs, my sed is 15, he didn't test ana or anti-car-p, but RA Factor is "<10" and my crp is just a touch over 2.
Hmmm... sounds like you might need a 4th rheumy..
I went through 3 others before I found my current.
I researched online and found out all I could about her, I read her patient reviews, I asked other people I knew who had autoimmune diseases if they heard of her and what they know.. I asked my PCP to refer me to her. I’m so thankful I found her!
Sometimes ya just gotta keep searching for the right fit. Good luck to ya. It’s a bumpy road but you’ll get there!Thank you - I just hope I can get my insurance to cover it now that I have a doctor proclaiming that I'm perfectly healthy, lol.
True... but considering your levels were once high and you were on meds for it, is it possible you went into remission?
Did the new doc have access to the previous doctors records?
New doc didn't look at old doc's records... Basically acted like all other doctors are morons and he's the only one who knows how to diagnose- it was weird.
Can you be in remission and still have symptoms? My knuckles are still red and painful and swollen, my feet still have swelling in lumps on the bottom, I hurt/ache a lot. Mostly hands and feet, but also knees (both) and elbows (both) and jaws - yawning kills me, and I can't open my mouth wide. Huge amounts of fatigue no matter how much I sleep, and stiffness that is worse with sitting still/lying in bed, and loosens up when I get moving. Butterfingers. Same stuff I've been suffering with for 2 years now. I've noticed that there are many different types of tests, the ELISA and the other ones - and different things to test for, the RF and the CCP and the CAR-P and the ANA and so on - and every doctor runs a different series of tests, and seems to think that the other doctor's tests aren't the 'good kind' - there's no continuity! I'm just going to have to print out all the labs I've had positives on over the past 2 years, take it to the next rheum, and ask them to not just send me to a pain clinic, lol. I forgot to mention I had allergy testing done at the same time I had the >100 SED rate, and came back to be allergic to literally everything they tested except 1 type of animal. 1 of the rheumatologists said a wonky immune system can cause that. 2nd Rheum said that my blood tests are weird, but based on what he's observed, and the results he's seen, I do have RA, even though he didn't agree with 1st Rheum that it's Seropositive bc he doesn't agree w the CAR-P as a diagnostic.
I would LOVE to go back to my 2nd rheum, but insurance took him off the list. 🙁 🙁 🙁Thank you so much for responding, sometimes I feel like I'm just floating in a sea of confusion and medical terminology! LOL!
