I know I’ve been MIA for a long time. I came here looking for support when I was newly diagnosed with PsA. I received a lot of good information and educated myself in this forum and researching online. Apparently my doctors weren’t happy about that. They dismissed my questions and observations about my condition. I reported side effects and new symptoms, but it fell on deaf ears. I finally got fed up and fired all of my doctors, rheumy, primary, everybody.
I started with new doctors in June. They listened to my symptoms and my concerns. The new cardiologist has dismissed my concern about having dysautonomia, but at least he listened before he scolded me about reading stuff on the internet.
New rheumy did blood labs, X-rays, and MRI. She found joint damage and active psoriatic arthritis
in both SI joints, a protruding disc pressing on the sciatic nerve, and early onset osteoarthritis in my mid-lower spine. She said no wonder I have so much pain. Finally after years of complaining, I found a doctor that listened and found the problem (s). I have been on mtx for over 2 years and failed sulfasalazine and otezla. She started me almost immediately on Remicade.
Today I had my 3rd Remicade infusion. Rheumy said my new diagnosis is ankylosing spondylitis due to psoriasis. I also have early onset osteoarthritis due to Ehlers-Danlos Syndrome.
EDS is characterized by hypermobile joints ("double jointed "), stretchy skin, and loads of medical problems.
My question is if anyone else here has Ehlers-Danlos Syndrome (EDS)? I’m curious because EDS patients seem to have a high rate of autoimmune diseases.