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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: is EDS type 3 linked to Pseudotumor Cerebri

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › is EDS type 3 linked to Pseudotumor Cerebri › Reply To: is EDS type 3 linked to Pseudotumor Cerebri

June 26, 2013 at 11:39 am #3823
Dr. Diana
Keymaster

OMG, Hon, this is a lot to address! I’ll hit the high points for you, OK? (After I finish my patents, we’ll make a lot of your other problems go away! 😉 MCAD is the old term for MCAS (it was a “disorder”, now it’s a “syndrome”). There is another condition that is abbreviated as MCAD, and I think the mast cell docs didn’t know that! Funny, huh? Geographic tongue: I know of one other patient who had that and it went away when he controlled histamine and avoided eating histamine foods (see my video on histamine foods). Out of everything you said, the one thing that concerns me is that your scars went from white to brown. I can’t diagnose over the internet, of course, and I can’t see your scars, but that is not normal, and I would recommend that you actively look for an answer — dermatology and endocrinology would be a good place to start). Gastroparesis/constipation is horrible, but I’ll have that answer for you soon, OK? We’ll peel back the layers one at a time. Our propensity for hydrocephalus (or pseudotumor cerebri) is pretty high, but again, I can’t tell you what to do (LP or not; shunt or not), but our hydrocephalus doesn’t appear to be related to the typical presentation of overweight females (my skinny son will attest to that!). Eye doctors usually use Diamox to treat it, but you’ll want your docs to give you a good once over to make sure nothing is getting missed. OK? After I finish these patents and studies, I’ll reactivate the consultancy so if you need more help, I can do that. Sound good? Hang in, my friend.

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