July 29, 2011 at 5:49 pm #52
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?July 31, 2011 at 12:24 pm #1355
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?July 31, 2011 at 4:20 pm #1362
There are pictures under this heading under eyes-Brown Gold Halo around pupil.
Here are the direct link to see easier.
These were just taken about a month ago and it one of each eye close up. i am keeping close contact with my doctors. The opthamologist is writing a report to my primary care doc about the possible TIA and occular migraine idea, also to let him know to have a refraction done sooner than when i am dur in january 2012 so that with referral from primary doc the refraction will be covered by my optometrist I ahave been seeing for over 7 years. I also see the opthamologist for again in six months unless things get worse with the vision loss comming and going or other things that do not seem the norm.
I am near sited-not sure if very severe but can not see any detail without being fuzzy without glasses on, have astigmatism, diplopia, myopia, ect.
I am seriously thinking of second opinion from UCLA as I have a authorization in place that does not expire until July 5 2012.
Is there anyone at UCLA in opthamology that is familiar with EDS, and other eye issues that may be a good second opinion?
The opthamologist I see locally in San Luis Obispo California is Dr Derek Lauretzen whom is a retina aspecialist. The local Optometrist I see is Dr Douglas Majors in Paso Robles California.July 31, 2011 at 6:33 pm #1364
Thank you for sending your iris pictures! Well, this is certainly no KF ring! What did your eye pigment look like before? Have you taken any prescription eye drops (or drops for eye lash growth, perhaps?). Frankly, Sweetie, this has me stumped! The only thing I came across was a potential link to multiple myeloma (worth mentioning to your docs), but that just doesn’t “feel” right. Two ‘zebras’ in the same person?
I will run this by some colleagues of mine, certainly. I wish I knew someone at UCLA, but alas, I don’t. Meanwhile, if a doc figures it out, will you let me know?
Thanks so much!
:)Dr. DJuly 31, 2011 at 6:39 pm #1365
Hi Mother1991, Here is a cool picture of thinning of the iris. See where the light is reflecting back through the iris to your left? It looks pinkish-orange because it is bouncing off of the orangish retina/choroid and you are seeing the light reflect back at you. You don’t have thinning of the iris!
http://www.ophthalmicphotography.info/website/slit lamp/atrophy.htmlJuly 31, 2011 at 10:14 pm #1366
No eye drops or anything for eyelash growth. The brown pigmentation seems new. I asked my parents and family and friends that have known me my whole life and none had seen this before. Also it is visible by naked eye. I will definately keep you posted. About 3 months ago I did have a leukemia lymphoma panel done because of still unexplained swelling of right arm with rash. It was negative. I seem to be one of those patients where some things have been found out that was once unexplained to others still no known idea. I also present in ways that do not always seem the norm. I expect may never know the answer to everything but am still vigilent in my learning process along the way.
Maybe you could ask your collegues if they know anyone at UCLA. Any lead is worth is worth investigationg.
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