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Eyes and Neuropathy

Eye Conditions | Last Active: Dec 23, 2023 | Replies (299)

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Hi Rachel, @rwinney. Nice to hear from you. You are right! It is what it is so I am very careful with my decisions. I know how some doctors can be. We do our best with the information we are given. Plus, we know our bodies better than any doctor. I am sorry I did not see your links. I will check them out. Sorry to hear your scar tissue is the cause of your worsening photophobia. It is not fun having eyes sensitive to light. I am always looking to find ways to help. I know blue light or electronic devices do not make my photophobia worse. I found sunglasses outdoors to be very helpful. Thank you, having prescription glasses with the clip-ons has made life easier. I close one eye to stop the double vision for now. That is how I write and use electronic devices.
You can always go see other ophthalmologists for their opinion. It won’t hurt to listen but be prepared to ask questions to help yourself. Take advantage of the resources available to you. You never know if one may shed the light for you to further research your condition. Medical care is always changing for the better. You will never know if a new breakthrough arises unless you ask. Won’t hurt.
I don’t say much to my medical doctors but they do listen to me because they know I am knowledgeable and serious about my health. I believe that is the reason I have survived. I am always looking for the next step to improve on my condition. I feel I owe it to everyone that cares, especially my family. Take care of yourself and continue to be your own advocate.

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Replies to "Hi Rachel, @rwinney. Nice to hear from you. You are right! It is what it is..."

@avmcbellar Thank you for the advice. I may search a new neuro opthamologist. When I was first diagnosed with Small Fiber Polyneuropathy, my research lead me to find there is a cornea confocal microscopic test to prove neuropathy via cornea. as it contains the most small fibers in the body. My neurologist told me no bother because I had skin biopsy and the equipment is so expensive that noone in my area has it. I wonder if Mayo has it? Probably. I just always felt that would be a better look into my neuropathy and eye relationship.

I wanted to mention that I use different shades of sunglasses that fit over my regular glasses. One pair is a lighter tint which I can use inside. Of course, if you are depending on prescription sunglasses, that may get costly. I gave up on prescriptio ones because I needed various shades and was too costly.

I think of you as I type this because it's very challenging....my eyes go screwy and its taxing. I pay for using my eyes but I do it anyway! I too have done the one eye closed bit. I'm so sorry you have to do it all the time. Oh the challenges! If you notice my profile picture...my hat reads SIMPLY STRONG (backwards). I'm so proud to be associated with Connect and be influenced by fellow SIMPLY STRONG people.

Best to you,