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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: confused about dysautonomia

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › confused about dysautonomia › Reply To: confused about dysautonomia

October 17, 2013 at 9:43 pm #4524
Dr. Diana
Keymaster

What a smart group we have here! Everyone is right! That is a GREAT picture of livido reticularis, which can be due to numerous forms of vasculitis, blood-thickening disorders — like anti-phopholipid syndrome, or it can even be due to some medications. But trust me, it’s not normal, and I knew my kids were doing better when their livido went away (finally!). The second rash — did that itch? I also *really* believe that you (and many more of us) are suffering from much more than mast cell problems. I’m trying to hone in on the culprits now. You’ve probably heard me say that I felt like I was being eaten alive from the inside out (eww…) but I also began to develop that HORRIBLE burning — just as you described. A part of me thought, “heck”, and the other (geeky-scientist) thought, “Great! Now I can figure out what is wrong with these folks!” 😉 I am running lots of tests on myself and my poor lab rats (my kids. ha). I am determined to figure this out, and have some blood work out looking for some pretty unusual stuff, but I think I can figure this out. Hang in, my friend. Like many of us, I just don’t think that mast cells are actually our “true” enemy. I think they just sort of become attracted to the inflammation, and they become a sort of red herring. By all means keep up the treatment (it helps), but it is not an end-all-be-all… Big hug…

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