Connect
← Return to Help with understanding test results
Discussion
Help with understanding test results
Autoimmune Diseases | Last Active: Jun 29 6:13pm | Replies (79)Comment receiving replies
@elisabeth007 Does this mean you don't have joint/arthritis problems? I don't either. I am getting the "impression" that Rheumatologists don't want to Dx and treat auto immune diseases and instead really want to treat patients with joint /arthritis problems. The "arthritis pain clinics" they work at are a "hint". I guess the problem may be that the PCP's (like mine) who send patients to Rheumatologists for auto immune Dx, may not know what else to do.
I have found a few Rheumatologists who do specialize in auto immune (instead of joints), but they are heads of depts. at teaching hospitals, and don't accept Medicare. That's my dilemma.
I am beginning to wonder if I truly need a DX from a Rheumy (who specializes in joints) to begin with and may be better off focusing my efforts on finding a good pulmonologist and an allergist/immunologist instead. At least for now and then go to Mayo clinic Rheumatology when I'm feeling more up to the trip. May I ask how you found your two good specialists?
And, while this is all new to me, as long as you have the "formal" Dx that you believe correct and necessary - why continue seeing a Rheumatologist (if you don't have joint issues?)
Replies to "@elisabeth007 Does this mean you don't have joint/arthritis problems? I don't either. I am getting the..."
in response to your question of how i found my two good specialist:
1. In 2017, i had surgery on
my shoulder. An x-ray related to my shoulder showed that i had some growths on my lungs. i called Cleveland Clinic scheduling, described the issue and was given an appointment with the only pulmonologist i’ve ever seen. He ran a battery of tests and found that i had asthma based on a test that is rarely used. i have NEVER tested positive for asthma on a traditional spirometery test. Re the allergist, he is also at Cleveland Clinic and i made an appointment with him after i had an anaphylactic reaction to a drug. I have the good fortune of having a health insurance plan that does not require PCP referrals.
At times, i ask doctors i trust to refer me to their trusted colleagues. i tend to quite quickly dump Drs i don’t trust and/or are dismissive to me.
I wish you the best of luck in finding and connecting with Drs who you trust and are concerned about you. When i have new or exacterbated health problems, i generally quickly and concisely send “my chart messages” to
my drs detailing the situation. Often their nurses respond on their behalf. i also tend to be clear in asking for what i think i need eg a holter monitor during a period when a pcp noted my heart beat was irregular but 5 minutes later did an eKG that was normal.
i don’t know if what works for me will work for anyone else.
Connect
@rebaba I can imagine that you are frustrated with the medical merry-go-round. Rheumatologists ARE the doctors who treat autoimmune diseases. The biggest problem with this is that autoimmune diseases are barely taught in medical school until now. The incidence of AD has really jumped recently so the doctors have a lot of catching up to do. You can find a more up-to-date physician by going to a comprehensive medical center ( and the doctors take Medicare!)
Can you picture seeing a really good rheumatologist and not getting a diagnosis?