Eyes and Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Jun 17, 2020

I would love to hear from folks who have peripheral neuropathy and eyes problems such as worsening dry eye and photophobia (light sensitivity). Has anyone been to a neuro opthamologist for this and been advised of the correlation? What did you learn?

My eyes have mitigating circumstances…. beginning with Fuchs Dystrophy (cornea disease) requiring cataract and cornea transplants, intractable migraine and Small Fiber Polyneuropathy…all of which play off each other. Photophobia, for me, has been constant since prior to eye surgeries and increasingly worse after. Migraines create photophobia and vice versa. SFN is nerve damage/dysfunction which for me has created hyperalgesia (overactive and hyper sensitivity). The cornea contains the highest number of small fibers in your entire body. My ongoing dry eye is developing along with intense flares of light sensitivity. I feel like a vampire…it puts me down, to bed, in hiding. As I explore how to tackle worsening dry eye, I came across this link that opened my mind further and thought maybe it might help some of you who have dry eye and neuropathy.

Interested in more discussions like this? Go to the Eye Conditions group.

@johnbishop

Thanks Rachel, I also forgot to mention that I've been a little concerned since I had the Mayo GeneGuide test done which showed that I was increased risk for Age Related Macular Degeneration ( CFH ARMS2 gene). I was sad to see that the Mayo GeneGuide was dropped by Mayo but my data is still accessible and I have saved the reports offline.

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John, I will pray that God has mercy on you and that you don't get macular degeneration. 🙏🙏🙏🙏 Sunnyflower

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@rwinney

@sunnyflower Good researching Sunny! Yes, I've seen 2 neuro-opthamologists. One before my neuropathy diagnosis and one after. I didnt get very far either way in answers other than agreeance that neuropathy causes my problems. The reassurance was comforting I suppose. Worth a check into for those who have neurological eye concerns.

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That is so great that you found a neuro-ophthalmologist or to even! By the way, did your insurance cover those doctors? Were they preferred providers on your plan? Yes, I would think it would be some comfort that you know what is causing the problems. Sometimes validation is really helpful! Many blessings, Sunny flower

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@sunnyflower

John, I will pray that God has mercy on you and that you don't get macular degeneration. 🙏🙏🙏🙏 Sunnyflower

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Thank you @sunnyower. I appreciate all the prayers.

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@sunnyflower

That is so great that you found a neuro-ophthalmologist or to even! By the way, did your insurance cover those doctors? Were they preferred providers on your plan? Yes, I would think it would be some comfort that you know what is causing the problems. Sometimes validation is really helpful! Many blessings, Sunny flower

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@sunnyflower Yes, both were covered. The first was about 5 years ago on a referral from my cornea specialist and the second was this summer through Medicare.

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@sunnyflower

That is so great that you found a neuro-ophthalmologist or to even! By the way, did your insurance cover those doctors? Were they preferred providers on your plan? Yes, I would think it would be some comfort that you know what is causing the problems. Sometimes validation is really helpful! Many blessings, Sunny flower

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@sunnyflower Yes ma'am, I was covered both times. Once by a high deductible plan after being referred by my cornea specialist and the other by my current Medicare plan. I hope this evening brings you comfort. 🤗
Rachel

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@johnbishop

Thank you @sunnyower. I appreciate all the prayers.

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Hey John, when people don't sign their names at the end of their post, I don't know who is writing bc I can't remember who belongs to what last name or "handle" they use that isn't their name. It makes it very difficult to reply to that person by name

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@sunnyflower

Hey John, when people don't sign their names at the end of their post, I don't know who is writing bc I can't remember who belongs to what last name or "handle" they use that isn't their name. It makes it very difficult to reply to that person by name

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@sunnyflower
Hi Sunny, yes not everyone feels comfortable using their real names here. I think they are trying to be careful. The internet is, as you know, attended by some very bad people along with the 99% good and well meaning people. And some people are trying to be as safe as they can.

I try to remember everyone by their handle or Mayo name. I suppose if someone wanted to, they could make a list of each person's handle they want to remember and write a few notes with each one to remind them of who they are. I try to do it in my brain which is hardly a perfect way to remember. If you click on their handle (I am talking about the @<name> thingy in blue), you will be taken to their profile page and you can read some of their recent posts as a refresher. I don't know how to go back very far in their post history though. Best, Hank

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@rwinney , I saw this post about dry eye conditions and peripheral neuropathy. I do have both. I also have PMR. My understanding of part of my dry eye problem is a relative deficiency of meibomian glands. (glands on underside of eyelids that secrete oily lubricating substance ) I am also experiencing photopsia in my right eye (shooting stars or flashes of light on peripheral vision) however this seems to be caused by posterior vitreous detachment, a normal process I am told.
I also would like to hear from folks who are experiencing these cluster of eye symptoms. I did also have a temporal artery biopsy shortly after being diagnosed with Polymyalgia Rheumatica (PMR) to rule in/out Giant Cell arteritis. Rachel, I have lots of questions, not many answers. 🙂 David

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@sunnyflower

Hey John, when people don't sign their names at the end of their post, I don't know who is writing bc I can't remember who belongs to what last name or "handle" they use that isn't their name. It makes it very difficult to reply to that person by name

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Hey @sunnyflower, You bring up a good point which is why I always tag the person my message is replying to using their member name. Sometimes I will "sign" my name but since I feel like I'm sitting in Cheers where everybody knows my name I normally don't type my name unless it's a really long post and you can't see my member name at the top of the post. So just for you, thanks for the reminder… John 🙂

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@phoenix0509

@rwinney , I saw this post about dry eye conditions and peripheral neuropathy. I do have both. I also have PMR. My understanding of part of my dry eye problem is a relative deficiency of meibomian glands. (glands on underside of eyelids that secrete oily lubricating substance ) I am also experiencing photopsia in my right eye (shooting stars or flashes of light on peripheral vision) however this seems to be caused by posterior vitreous detachment, a normal process I am told.
I also would like to hear from folks who are experiencing these cluster of eye symptoms. I did also have a temporal artery biopsy shortly after being diagnosed with Polymyalgia Rheumatica (PMR) to rule in/out Giant Cell arteritis. Rachel, I have lots of questions, not many answers. 🙂 David

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@phoenix0509 David, you indeed have a plethora of concerns and problems. What a difficult path you are on. I'm sorry for this. Let's see if others share their common problems with you, or can offer help in any way to you. Thank you for bringing these topics to the conversation. I wish you well.
Rachel

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@jesfactsmon

@sunnyflower
Hi Sunny, yes not everyone feels comfortable using their real names here. I think they are trying to be careful. The internet is, as you know, attended by some very bad people along with the 99% good and well meaning people. And some people are trying to be as safe as they can.

I try to remember everyone by their handle or Mayo name. I suppose if someone wanted to, they could make a list of each person's handle they want to remember and write a few notes with each one to remind them of who they are. I try to do it in my brain which is hardly a perfect way to remember. If you click on their handle (I am talking about the @<name> thingy in blue), you will be taken to their profile page and you can read some of their recent posts as a refresher. I don't know how to go back very far in their post history though. Best, Hank

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Hello Hank, yes I too am a very private person and can't even believe I'm on a Blog let alone sharing personal stuff LOL! I think what I'm talking about is that some people do sign their name after a post and sometimes they don't. The Gabapentin has all but destroyed my memory so it is really tough to I know who I am speaking to match what they shared with their stories. That's the real issue, reading the stories and then not knowing in later posts who had shared what story, it's just a matter of not knowing how to address them rather greet them in the beginning of a response or a post with a new thought for that person.

It is because the web is so full of evil and evil people that I do not typically post any personal information about myself and none on social media. I will just have to try harder. Thank you for your input and take good care of yourself and Linda, Sunny flower

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