Hi Everyone,
Tara went back to the optholmologist after seeing the cornea and retina
specialist. He did a field test on both eyes and her right eye perfomed
poorly. Her left eye seems to be fine. The doc suspects a genetic
disease called retinitis pigmentosis. He is also sending her to a neuro-
optholmologist and for a contrast MRI of the eye to check out any other
possible cause for the tunnel vision. I have trouble believing she has
two genetic diseases and that this new eye problem is not related to
APECED. But of course this specialist is not familiar with APS Type 1.
When you see you see your doctors if you could ask them about any
possible correlation with loss of peripheral vision and deteriorating
vision in one eye only I would appreciate it. I am also going to email
Dr. Winer at the NIH.
Thanks in advance.
Linda
Hi Everyone, Tara went back to the optholmologist after seeing the cornea and retina specialist. He did a field test on both eyes and her right eye perfomed ...
Hi Linda, Â Â I agree with you that another genetic disease is not likely. I will ask Ryan's cornea specialist when we see her next time. I have the email...
When my daughter Sarah was four months old she was diagnosed with Leber's congenital amaurosis and determined to be legally blind. She was a patient at Bascom...
Hi Babette, Good to hear from you.Has Dr. Levy confered with Dr. Noel Maclaren since they are both at Cornell Medical Center in NYC? Dr. Marclaren is one of...
Hi Linda, I have personally seen Dr. MacLaren but I believe that it was before her ERG and we were still going with the working diagnosis of Leber's....
Hi Babette, Thanks for filling me in on Sarah's history. I will let you know the final diagnosis for Tara when the testing is complete. Best wishes, Linda PS....
Hi everyone, Julia, do you have your babe? Linda, I was wondering how Tara's ERG went and whether the docs gathered any useful information. My Julia is having...
Hi Jennifer, Tara had the ERG last Monday at Columbia University. She had no anesthesia, sedatives, etc. for the test. She said the test was perfectly pain...
Hi Babette and Julia, Tara, as of now, does not have a confirmed case of retinitis pigmentosa. She has had every test, including the ERG, and her left eye is...
I am curious as to how many people with APECED have eye involvement. My Julia has fairly severe photosensitivity and very dry eyes which affect her vision. We...
Hi Jennifer, James has keratoconjunctivitis. He has severe photosensitivity, scarring of the cornea as well as vascularisation of the cornea. His vision in...
Dear All, My eyes have been very sensitive to light for years, but the doctor's never see anything during exams. What would be the evidence of the reason for...
The neuro-optholmologist confirmed today that Tara has retinitis pigmentosa. He had ordered a multi focal erg-ver test which she will have on Mar. 30. So far...
Jennifer I think a registry would be great if we only knew what to do to get one.I hate going to the doctor an having to tell them all about Apeced then they...
Please do post what you find. My cornea in the left eye is getting "cloudy" so they told me and "thick" and my right eye was having issues similar to detached...
Thanks for the quick replies Vicki and Julia. I spoke to Dr. Maclaren today and he said there is no correlation with APCED and Retinitis Pigmentosa. He said he...
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