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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: Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Vision › Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine › Reply To: Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine

July 31, 2011 at 12:24 pm #1355
Dr. Diana
Keymaster

Hi, the increased pigmentation of the iris does not mean thinning of the iris. when the iris thins, it becomes almost translucent, and docs can use a microscope to shine light behind it, the light bounces off of the retina, and looks almost red in the thin areas. I don’t believe the iris thinning (if you have any) is related to the retinal thinning. Are you very near-sighted? If so, you’ll want to watch for flashes of light and floaters. If you notice those, call your eye doc right away. That can mean a retinal tear or detachment. If you are highly nearsighted, they can give you laser treatment prophylactically. I’ve heard from some other EDS folks that their copper levels are off. And I’ve heard from one other that she has increased darkening of her pupillary rim also. I wish I could see it! I’m glad your KF ring is stable. The possible TIA’s and ocular migraines are VERY common with us. When I first became sick, they’d happen almost every day. You want to be sure that your doc (eye doc and general doc) is aware of your TIA’s because they can mean an impending stroke. With me, I knew it was my vessels constricting on and off — it was as if they forgot what to do! That went away over a couple of years, but I would have been majorly freaked out if I wasn’t a doc able to discern what the heck was going on. We are all different, though, so we have to be careful not to assume all of our symptoms are EDS-related and harmless. So, please stay in close contact with your docs, OK?

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