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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: dermatographia, anyone?

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

September 3, 2011 at 10:07 pm #1439
ourfullhouse
Participant

I too have dermatographia. It was worse or the reaction was worse, when I was younger. Kind of one of those fun “tricks” I could do, like the finger tricks from EDS.

I also wanted to comment on the thyroid thread going here. I don’t have nodules, at least not that I am aware of (I do have those weird EDS nodules in my shins… oh what is the name for those? Escapes me now.). But, I am hypothyroid. My doctor treats 99% of his hypothyroid patients with Cytomel, which is just T3. Finds patients feel the best with this treatment.

Also, something some of you might want to check out, if you have high cholesterol and especially if it hasn’t responded to diet/exercise changes or even using cholesterol meds, you should be checked to see if you have the APOE gene mutation. My cholesterol has been horrible for years, but my doctor always thought it was “just” a sign of being ill and also, we had bigger fish to fry with my health that the cholesterol could wait. Well, he started testing patients that are very ill like myself for the APOE gene mutation and lo and behold, I have the mutation/defect (Mine is the 3/4 variety.. 4/4 is the worst, but 3/4 isn’t far behind). What this means in practical terms is that people with the APOE defect do not process fats appropriately…. we absorb them TOO well. This of course makes the risk for coronary problems and strokes higher and more recently has been linked to a greater prevalence of Alzheimer’s. The trick is to get those bad cholesterol numbers lower without going completely low/no fat, because our brains NEED fat.

Anyway, I would be very curious to hear if anyone else in this realm of illness (MCAD, POTS, CCSVI, EDS, etc.) also has the APOE defect. I am starting to think there is a whole group of genetic defects that might all go together (I also have the MTHFR defect).

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