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.


Hi Spammy, so glad you have doctors that you're now connecting with. It makes such a difference. Did you know that Ben's Friends has an EDS community? Here is the link if you're interested: http://www.ehlersdanlossyndromesupport.org/

Hi Jules,
Thanks for the link. I never thought to look for EDS on here. It’s a newer diagnosis and seems sort of rare. Most of doctors have heard of it, but have never had a patient with the EDS dx.

EDS is rare, unfortunately of late the diagnoses is not. Especially the Hypermobility type. Hope you are FINALLY on the right track.

BTW losing patience is not a bad thing. I will caution you though, if you are a praying type, once you start down the autoimmune path NEVER pray for strength always pray for patience. If you get strength, you are very likely to have to pray for bail money next We deal with too many specialists with too narrow of a focus sometimes....

Haha, I’ve missed the wise words of advice from Lamb! I will keep that in mind. Patience, patience, patience. Patients need patience.

Spammy, I think Lamb has outdone himself on that advice. A keeper for sure!

Welcome back. Sorry things are getting more complicated for you. Yes, you should head over to the EDS forum.