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Rachel, Volunteer Mentor (@rwinney)

Eyes and Neuropathy

Eye Conditions | Last Active: Feb 24 10:56pm | Replies (260)

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@jesfactsmon

As you know Rachel, Linda has Fuchs as well as photophobia and she also has dry eye. The photophobia is getting progressively worse as is the Fuchs. Her eyesight is not great but her eye doctor has told her she should wait for the corneal transplants for the Fuchs until she needs to have her cataracts dealt with, whenever (he decides) that will be. But for the dry eye Linda takes a product called MURO 128 5 Percent SOLUTION which helps her a lot. I think she uses it once or twice per day. Thanks for the links, will take a look at them Hank.

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Replies to "As you know Rachel, Linda has Fuchs as well as photophobia and she also has dry..."

@jesfactsmon Oh good, I'm glad she has found something that helps. I've heard the Muro drops work well for some. I'm using up my Systane now, which I prefer over Refresh, and the plan is… to go with preservative free next purchase. I found the links helpful.

HI to Linda from me!!! Hoping today is a tolerable day for her. 😁

Hi Hank. Wanted to connect with you so I jumped back to this discussion. Has Linda had a skin punch biopsy to diagnose her SFN? Cant remember.

The reason I ask is because I discovered a while back there is another means of testing for SFN and that is via Cornea Confocal Microscopy. It's a very expensive piece of equipment, and on the newer side of testing, that not only diagnoses but, also offers the ability to examine severity of progression and possible regeneration.

Last year I was on a mission to find who had the microscope because the cornea holds the greatest # of small nerve fibers in the whole body and given my neuropathy, photophobia, and hyper sensitivity … I thought it may be a vital test to help piece together my issues more direct and in depth. My neurologist brushed it off and said ask your eye doc. My cornea specialist said the microscope was too expensive to purchase. So, I gave up and dropped the thought. Until recently.

I will attach a link or two for your review. I thought of Linda because it mentions chemo induced neuropathy (among others) and I think offers clarity for neuropathy patients. I am scheduled 7/14 to meet with (a 2nd) Neuro Opthemologist, that I tracked down, who is willing to review my case and weigh in on whether this is a worthy cause for me. He is on the board of a local university hospital that offers Cornea Confocal Microscopy. Maybe I'm in over my head with playing Dr but it does not appear to be rocket science so its worth a shot. If I'm wrong, I'm wrong…nothing ventured, nothing gained. Just wanted to share. I will be curious on your thoughts after reading and researching.
https://www.nature.com/articles/s41598-018-23107-w

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