My very astute autonomic specialist at Mayo Clinic believed that the root of my dysautonomia was likely an autoimmune disease and ran a very extensive autoimmune panel of blood tests on me during one of my visits. The results were a bit perplexing because they did not indicate any specific disease, but I had several high markers. He suggested that I see a rheumatologist since this was not his specialty.

I spent the next 3 years trying to find a rheumatologist. I saw two different rheumatologists at major academic institutions. One told me that because I was “so flexible” from my EDS (Ehlers Danlos syndrome), I could not have RA (rheumatoid arthritis), despite high anti CCP levels, a common diagnostic test for RA. Another was concerned but said I was very complex, and he needed to review my chart in more detail and would get back to me. He never did. I called him and portal messaged him several times. I called several others and always received the same message, “You are too complex.”

Finally, a colleague I had worked with who specialized in HaT (hereditary alpha tryptasemia) and was board certified in both GI and internal medicine, did a consultation, and finally diagnosed me with RA, based on clinical exam and elevated CCP levels. By then, my joint pain, swelling and fatigue was at a high and I had lost almost 40 pounds. Since she practiced in the south and I live in the northeast, she recommended that I find a local rheumatologist to manage me. She did start me on a medication that she knew HaT patients tolerated. Luckily, she was experienced with getting insurance approval, because this JAK inhibitor, Rinvoq, is typically only approved after failing other first line drugs. I had only been on hydroxychloroquine for a year, prescribed by my neurologist, although it had not helped the RA.

A friend told me about a local rheumatology nurse practitioner who had a solo practice. I saw her in consult, and she was willing to take me as a patient, despite my complex history. She is very smart, open-minded, and willing to collaborate with my other specialists.

Although my hands, wrists, knees, and ankles are affected, so far, I have no bone erosions, just swelling and pain. You’ll see in the photo above how my knuckles have been affected.

There are some great resources for people affected with RA. Here are a couple:

https://www.arthritis.org provides education on their website, webinars, and advocacy.

https://arthritis.theenthusiasticlife.com/ Cheryl Crow provides multiple types of education and advocacy. She is an occupational therapist who also has RA.

One thing that I have learned is that you can have negative autoimmune markers for a few years before the autoimmune disease shows itself. This is especially common for those of us with multiple diagnoses. In upcoming posts, you’ll be hearing more about the interplay of my diagnoses.