NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Hi again! I have an update, and some questions. › Reply To: Hi again! I have an update, and some questions.
I’m sort of with MTD here, in both being tested for lupus, and for trying to avoid the “big box stores”. You would think that a diagnosis of EDS would open doors, right? Just the opposite in my case. Everything was blamed on EDS and I was punted from the doctors’ offices, told to seek an “EDS specialist”. I think I could have said I had pink and purple butterflies on my skin, and they would have blamed it on “EDS”! That was very frustrating and I often wished I could erase that diagnosis from my record so doctors would continue to think! Now, your question about plaquenil is an interesting one. I do know of a physician with EDS who does better on plaquenil — there can be advantages beyond treating autoimmune disorders. Having said that, you know of course, that it is not without potential adverse reactions and side effects (like the eyes!), and no one should take its use lightly. I don’t seem to have “typical EDS”, in that I have no joint pain. When I developed connective tissue pain, however, I did try it for a while, but saw no difference. There are many forms of inflammation (and sources of our various types of pain), and sometimes it is a bit of a guess. Only you and your doctor know where you are on the “willing to take a risk scale” (although your fear of a cervical collar may hint where you are on this scale). 😉 Please let us know how it goes!