I saw the opthamologist/retina specialist today. I still have thinning of the retina from last exam 6 months ago, but is stable. He did notate more pigamentation, but says this common in most people, even though for me it seems different. I did ask if the collegan and connective tissues in the eye are weaker because of the EDS, he was not sure. The other part is huge increase in light sensitivity and where there is loss of vison for a few minutes to up to a half hour in my right eye mostly that I could tell. Will keep detailed journal of this and let him know if it is one or both. He did check to see if there was any subluxations of the lens but seemed stable with none. Thinks maybe having TIA’s or possible occular migraines. I will need a refraction done sooner than January because vison with my glasses on has drastically changed in my left eye from 20/20 in January to 20/50 today and the right eye was stable at 20/30. I am right handed but my left has always been stronger than my right, even did patching as kid to try to strengthen the right eye. Good news no Keyser fleicher Rings even though my serum copper levels are still high. In Nov 2010 was 196 now 186 so down some. I have even been on low copper diet and suplpements have no copper.
My question is this, with more pigmentation in the iris and having the diagnosis of EDS is it possible that the connective tissues are thinner now than before thus showing more pigmentation resulting in brown around the pupil? Does thinning of the retina have any link? Thirdly if there is possible TIA or occular migraines is this interrelated to EDS?