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

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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Hello John! I chuckled w/ your Cheers example! Good one! To be fair, John is a very common name. I love it. So many Johns it would be hard for someone to track you down were you not to share your last name. You have a very nice last name too. Mine is unique so I wouldn't want to put it out there. fHope this is a great day for you and that you and yours are doing well. Warm regards, Sunny PS: Mmmmm, I haven't figured out yet how to insert or create an icon on my Surface tablet here. I'll ask my husband, the computer guy.

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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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Hello David, wow, you've got a lot to deal with and that's a gross understatement! I too have the meibomian gland problem. The docs have said dry eyes can be from old age and/or disease. They said I have both LOL! There have been some great discussions and tips about the subject of eye problems very recently. I'm new to Connect and a pretty slow learner. Someone may have already directed you how to get into that discussion. I think on the main Neuropathy page in the directory, you can select the discussion on eyes? I hope I'm not misleading you. I still struggle with how to get back to the main site! I hope and pray you get some relief and the answers you need. Many blessings, Sunnyflower 🙂

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@sunnyflower

Hello John! I chuckled w/ your Cheers example! Good one! To be fair, John is a very common name. I love it. So many Johns it would be hard for someone to track you down were you not to share your last name. You have a very nice last name too. Mine is unique so I wouldn't want to put it out there. fHope this is a great day for you and that you and yours are doing well. Warm regards, Sunny PS: Mmmmm, I haven't figured out yet how to insert or create an icon on my Surface tablet here. I'll ask my husband, the computer guy.

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@sunnyflower – If your Surface tablet can do a right mouse click with the mouse pointer in the text box while you are typing, you might see an option for Emoji like I have on my Windows 10 computer 🙂

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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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David, I can't believe that I didn't see that you can access the discussions about eyes right from the bottom of Rachel's post to you. I am so uniquely talented that way. Looking for a rock to crawl under…..Take care, Sunnyflower

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@johnbishop

@sunnyflower – If your Surface tablet can do a right mouse click with the mouse pointer in the text box while you are typing, you might see an option for Emoji like I have on my Windows 10 computer 🙂

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Thanks John, I don't use a mouse b/c my device is on a tray over my knees from bed. No space on my tray for a mouse so touch the screen. I'm so used to that. My hubby is going to check it out but knowing this info, do you have any other ideas? Thanks so much for taking the time!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 🙂

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@johnbishop

@sunnyflower – If your Surface tablet can do a right mouse click with the mouse pointer in the text box while you are typing, you might see an option for Emoji like I have on my Windows 10 computer 🙂

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John, you're a genius. I plugged in my mouse and sure enough, on the right click I got the emoticon options. But even better, I tried holding my finger on the cursor and guess what????
👍😊👏 They aren't the best I've ever seen but hey, good enough! Yay! I actually figured something technical out by myself! Thanks for your help! Sunnyflower

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@rwinney

@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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Rachel, that's great! I will have to check with my coverage to see if there are any preferred neuro ophthalmologist providers that I could see under my contract. Which is Medicare Advantage. For some reason I'm thinking I may have already addressed this post of yours? Oh my I I am so uniquely talented that way LOL! All the best, Sunny flower. 😊

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@sunnyflower

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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@sunnyflower Sunny, now I understand what you meant. When you are reading and posting are you in at home usually? If so, and you can do it, why not try what I started to suggest earlier. Get yourself a notebook of some sort. Better yet, something alphabetical, like an old fashioned address book. I have one, but I say "old fashioned" because I always assume life has passed me by with anything I use, like an address book. But if not an address book, alphabetize the pages of your notebook, allowing a page or two for each letter. When you read an interesting post, enter the user's handle on the correct page of the notebook. Then write a word or two or three to summarize what the person said, or anything meaningful about that person.

I mean, I don't see this as being too wacky of an idea. It seems like I spend more and more time on Connect. I never intended for it to become such a big part of my life (or such a big time sump depending on how you want to look at it). Can I help it if I am developing genuine caring for these people I never met in my life? Not only that but have never laid eyes on? And to a further point, I am liking it as well! You are becoming one of those people for me Sunny, for sure. Anyway, that is my suggestion. Maybe I or someone else will come up with a better one. One can hope. Best, Hank

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@sunnyflower

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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@sunnyflower, Linda. Do you use Connect on a computer or phone? I ask because you should be able to see who is posting at the top of the message. It says "Posted by…." Also included is information like:
"In reply to…"
And at the bottom of the message, the names of members who have liked the post.

On a computer, there is also an extra signal who is posting with the person's profile image and a brief summary of how many posts they've made and when they joined.

You'll find more information in these 2 blogs posts, especially the first one:
– Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
– What can you learn from a profile: yours or a fellow member’s? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/what-can-you-learn-from-a-profile-yours-or-a-fellow-members/

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@colleenyoung

@sunnyflower, Linda. Do you use Connect on a computer or phone? I ask because you should be able to see who is posting at the top of the message. It says "Posted by…." Also included is information like:
"In reply to…"
And at the bottom of the message, the names of members who have liked the post.

On a computer, there is also an extra signal who is posting with the person's profile image and a brief summary of how many posts they've made and when they joined.

You'll find more information in these 2 blogs posts, especially the first one:
– Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
– What can you learn from a profile: yours or a fellow member’s? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/what-can-you-learn-from-a-profile-yours-or-a-fellow-members/

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Thank you Colleen. I use both my cell phone which is a Samsung Galaxy and my Microsoft Surface tablet. It's just my memory, I understand there Mayo Clinic name is above their post but when they don't sign their name, it's a little bit of an effort to find who they are. I find I have to do an awful lot of back and forth and looking for different things besides to know who is saying what, sometimes the person's name is completely different than their Mayo Clinic name. And, a lot of my back and forth is to try to make sure I'm not repeating myself. I mean there can be easily over 30 emails a day. I don't want anyone to feel I have neglected something they have put effort into me about by not answering or answering the wrong person which I believe I have done already LOL, on more than one occasion. I really talented that way!

Thank you for taking the time I appreciate all the input for sure. Warm regards, Sunnyflower

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@sunnyflower

Thank you Colleen. I use both my cell phone which is a Samsung Galaxy and my Microsoft Surface tablet. It's just my memory, I understand there Mayo Clinic name is above their post but when they don't sign their name, it's a little bit of an effort to find who they are. I find I have to do an awful lot of back and forth and looking for different things besides to know who is saying what, sometimes the person's name is completely different than their Mayo Clinic name. And, a lot of my back and forth is to try to make sure I'm not repeating myself. I mean there can be easily over 30 emails a day. I don't want anyone to feel I have neglected something they have put effort into me about by not answering or answering the wrong person which I believe I have done already LOL, on more than one occasion. I really talented that way!

Thank you for taking the time I appreciate all the input for sure. Warm regards, Sunnyflower

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You'll always be @sunnyflower to me. 🙂

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@sunnyflower

Rachel, that's great! I will have to check with my coverage to see if there are any preferred neuro ophthalmologist providers that I could see under my contract. Which is Medicare Advantage. For some reason I'm thinking I may have already addressed this post of yours? Oh my I I am so uniquely talented that way LOL! All the best, Sunny flower. 😊

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@sunnyflower Nope, you didnt. All good . 👍🏻

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