Well, I have a seronegative RA along with EDS III, Dysautonomia, POTS, fibromyalgia, chronic sensitization syndrome, Pseudo-Tumor Cerebri, Delta Granule Storage Pool Deficiency, pelvic congestion syndrome, Raynaud’s, Livedo Reticularis, Sjorgen’s, RLS, hyperkinetic circulation, extreme venous pooling, classic migraine syndrome, delayed sleep phase syndrome, vitamin deficiencies, gluten sensitivity, strabismus, blah, blah, blah. Much like everyone else here, if you can name it, I probably have it.
I signed up under RA just to be different and because it sounded like you might need more with this dx, but not sure if seronegative variety will do. Just t’row me over to the EDS side if necessary because I definitely want on this bus if there’s room for me.
Unfortunately, I’m quite bummed that I’m in Ohio and wouldn’t be able to travel, but I would SO love to participate in the trials so count me in if possible. I might be able to fly in once to do this, but sounds like you need people to come back several times and that might be a little more than I can handle.
I’m very fortunate to have a wonderful doctor that would do anything to help me. Will there be at least some tests that remote folks like me can have our physicians order then submit results to you to assist with your data collection?
Thanks for all you do!