Thanks for reading! I've recently been undergoing testing with a Rheumatologist at Stanford and it's been rather exhausting and frustrating, anyone else out there in MS-land going through the Rheumy Run-Around? I'm curious about others' experiences and people who also may have clusters of auto-immune diseases. I have confirmed MS and an old case of Hashimoto's Thyroiditis, which is the autoimmune form of hypothyroidism, and now battling the "what's attacking the rest of me?" questions.
I have had one ankle tendon rupture into 4 strands like "a mop" (surgeon had never seen anything like it in sports medicine). I have contractures (Dupuytren's) in my hands, nodules on palm joints, one pinky that gets red at joint and itches, Plantar Fascia tears (resulted in large nodules of scar tissue, golf balls in the arches of my feet, very painful, if not tender they would have considered "Plantar Fibromatosis" in presence of hand contractures). I had bursitis and tendinitis in various joints before, and currently I have them in both shoulders along with TEARS in the tendons of both shoulders (will be starting PT soon to try to avoid surgery). I have bulging discs throughout my spine and I'm achey everywhere, in the joints, between the joints, arms/hands and legs/feet especially with burning aches in upper back and neck.
I've been told so far it could be a severe pain complication related to having Ehler's Danlos Syndrome (hypermobile joints due to collagen /connective tissue disease) or some other type of collagen/connective tissue disease, or an autoimmune disease that hasn't been discovered yet. I will be seeing another Rheumatologist at Stanford in Novemeber , this one specializes in connective tissue diseases, we'll see what he says!
The most frustrating thing is that my blood labs are normal so far (mostly, except for a some times positive ANA) and I don't understand how they can say "Your sedrate is normal so no inflammation" when they can look at any part of my body and visualize actual inflammation. So I'm hoping for a good explanation of that at Stanford!
Thanks for reading, looking forward to seeing if there is anyone like me out there with extra confusing this & that's going on! lol Sara