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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: SCLERODERMA AND EDS?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › SCLERODERMA AND EDS? › Reply To: SCLERODERMA AND EDS?

April 6, 2013 at 7:23 pm #3597
Henry40
Participant

Hi MJ
I assume you already have a diagnosis of EDS but not Scleroderma? Not sure what stage you are at with getting tests for Scleroderma. Have you seen your PCP or GP to get an autoimmune screen, in particular ANA? Firstly nothing is impossible, and I guess it would be possible to have both. It is a slightly odd combination as in classical EDS you tend to be stretchy due to a lack of collagen, but in scleroderma thickened skin due to abnormal collagen deposition. Is it safe to say you are thin and stretchy in some areas, say elbows, neck, but thickened over the forearms and hands? If you haven’t already maybe ask your GP for a rheumatology referral.
From my point of view, I don’t have a diagnosis, but have POTS/dysautonomic symptoms due to something underlying. I recently had a positive ANA test, negative for lupus, but with a few symptoms I thought suggestive of Scleroderma. I had a few issues with swallowing as well as thickened red patches over knuckles and elements of Raynauds. Being male though I thought I wasn’t sure. I had a repeat ANA 3 weeks ago and it was negative, though it notoriously fluctuates. Just in the last few days those red patches have returned and the raynauds to a lesser extent. So I’m still not sure but I have my rheumatology appointment in may. I don’t have a diagnosis of EDS either, though I am quite stretchy (not particularly hyper mobile). So less further along than you in a way but feel can identify with your current dilemma a bit. Good luck, keep us posted because if nothing else it is an unusual combination..

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