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PrettyIll

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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: Honeycomb rash?

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

January 19, 2012 at 9:47 pm #1689
KC
Participant

I too have cold skin and even if I don’t feel cold, like right now my torso, legs, feet, hands and arms are all cold to touch, (oh and nose). My temp usually runs about 97. But then occasionally the tops of my thighs will get hot for a few minutes for no apparent reason. At my dr. appt. 2 weeks ago my temp was 100. Don’t know what that’s about and she didn’t either.
My bp is labile and I do, at times, have +30 pulse when I go from lying down to standing up, usually after 5 minutes. But not all the time, usually in the morning.
I am at the beginning of trying to figure all of this out, (my only “official” dx is fibromyalgia and depression) but I have never been convinced that that is all that’s going on. It seems like it must, at least, be dysautonomia, too. I would really like to know what kind of dr. would dx it and also EDS. My pcp is thinking along those lines (EDS), especially after I tore the skin under my eye when I wiped water away in the shower, but she thinks that even if we knew for sure, there isn’t any treatment for it anyway. And then add in ccsvi symptoms, the dialogue with her gets more complicated. My insurance requires referrals, which she is pretty willing to do. So I am in need of some direction, if anyone has any input it would be much appreciated! Thank you!

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