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 Support Group.

@jesfactsmon Hank, It seems most members these days are playing “catch up” with their emails. We all may miss a posting here or there. Not a big deal. No worries.
I agree. What a big difference life has been during those times, very drastic! Our generation was fortunate to have learned to do with AND without internet and cell phones whereas the generations following us have lost the ability to think! So sad to see the lack of understanding. I see it all the time with millennials and the younger generations.
Back then not many people ate a vegetarian diet. It was seldom heard of. I pretty much have had a diet without meat for over 43 years with the exceptional seafood from time to time. People did not know how to deal with that diet but I had made it easier for them during gatherings by including fish. For meals on flights, I had to request a special diet to the airlines. People looked at me funny, saying “you poor girl”. What little did they know! I can understand the reasoning for fish less after watching Nemo. I certainly have become more sensitive, in my old age, to fish and avoid eating it when I can. Probably better for me today anyways with all the polluted waters. In the 80s I created a pseudo tuna salad using tofu which I still enjoy today. Thumbs up to the many food options available today for special diets! Glad to see people are more aware of their choices to become demanding.

Fantastic, your mom still does those things at 98! Good for her. The interest keeps her going and keeps her young! Make plans to visit your mom and sister. Traveling with an RV will make it a lot easier if you can. It is for us especially when taking all(5) of our furry friends with us. I don’t worry about them. They know the drill and enjoy trips too.

Where abouts in Connecticut have you visited? I lived in Connecticut for many years. Continued my education there.

Unfortunately my mother only learned the basics in the english language because she is European. My parents had immigrated to Australia where I later was born. She never learned Australian english. Australia’s population is made up of many nationalities, just like in the US. In fact the true Australians are the aborigines. Australia is only a few years younger than the US.
I taught my mother to use her smart phone to call me for translations and explanations. So far it works out well and she doesn’t worry. It is a confidence booster for her, especially when going to all her medical appointments and lab draws. Luckily, I can do everything remotely for her. For that, I am grateful to technology. I had the internet hooked up and now she connects with people all around the world including relatives in Australia . It is nice to still have our mothers to reminisce with. Gives them purpose too to video chat with the grandkids.

I don’t blame Linda with the medications. Good for her. I know I wouldn’t want to worry about potential harmful side effects. Who wants additional health problems? We have enough to deal with as it is. Wishing you and Linda well for a great weekend and good luck with PEA, Toni

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@avmcbellar

@jesfactsmon Hank, It seems most members these days are playing “catch up” with their emails. We all may miss a posting here or there. Not a big deal. No worries.
I agree. What a big difference life has been during those times, very drastic! Our generation was fortunate to have learned to do with AND without internet and cell phones whereas the generations following us have lost the ability to think! So sad to see the lack of understanding. I see it all the time with millennials and the younger generations.
Back then not many people ate a vegetarian diet. It was seldom heard of. I pretty much have had a diet without meat for over 43 years with the exceptional seafood from time to time. People did not know how to deal with that diet but I had made it easier for them during gatherings by including fish. For meals on flights, I had to request a special diet to the airlines. People looked at me funny, saying “you poor girl”. What little did they know! I can understand the reasoning for fish less after watching Nemo. I certainly have become more sensitive, in my old age, to fish and avoid eating it when I can. Probably better for me today anyways with all the polluted waters. In the 80s I created a pseudo tuna salad using tofu which I still enjoy today. Thumbs up to the many food options available today for special diets! Glad to see people are more aware of their choices to become demanding.

Fantastic, your mom still does those things at 98! Good for her. The interest keeps her going and keeps her young! Make plans to visit your mom and sister. Traveling with an RV will make it a lot easier if you can. It is for us especially when taking all(5) of our furry friends with us. I don’t worry about them. They know the drill and enjoy trips too.

Where abouts in Connecticut have you visited? I lived in Connecticut for many years. Continued my education there.

Unfortunately my mother only learned the basics in the english language because she is European. My parents had immigrated to Australia where I later was born. She never learned Australian english. Australia’s population is made up of many nationalities, just like in the US. In fact the true Australians are the aborigines. Australia is only a few years younger than the US.
I taught my mother to use her smart phone to call me for translations and explanations. So far it works out well and she doesn’t worry. It is a confidence booster for her, especially when going to all her medical appointments and lab draws. Luckily, I can do everything remotely for her. For that, I am grateful to technology. I had the internet hooked up and now she connects with people all around the world including relatives in Australia . It is nice to still have our mothers to reminisce with. Gives them purpose too to video chat with the grandkids.

I don’t blame Linda with the medications. Good for her. I know I wouldn’t want to worry about potential harmful side effects. Who wants additional health problems? We have enough to deal with as it is. Wishing you and Linda well for a great weekend and good luck with PEA, Toni

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@avmcbellar Toni, sending you a reply through a private message, please check it out. Best, Hank

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@phoenix0509. I am so sorry about your eyesight. Not that this is anything close to what you have to deal with but now I am grateful I had such bad reactions to all the meds I tried for my interstitial cystitis or I might be having vision issues on top of everything else and there ain’t no pill for that. You are a brave soul.

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@bustrbrwn22

@phoenix0509. I am so sorry about your eyesight. Not that this is anything close to what you have to deal with but now I am grateful I had such bad reactions to all the meds I tried for my interstitial cystitis or I might be having vision issues on top of everything else and there ain’t no pill for that. You are a brave soul.

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@bustrbrwn22 , it was nice of you to reach out and show concern about my eye conditions. At the moment the eyes are stable, I do have some photophobia (shooting stars) in right eye which show up when its dark inside or outside. For my dry eye syndrome I use Restasis (cyclosporin) eye drops per the Ophthalmologist. My biggest problem is pain in all extremities which is continuous since attempting to decrease my prednisone that I take for Polymyalgia Rheumatica. Which has lead me to question the original diagnosis of PMR. I am trying to be seen at Johns Hopkins in Baltimore for this widespread radiculopathy like pain. So if anybody has a connection to Neurology or Neurosurgery at JH. send me a note. Initial review of neck does not show obvious problems. Got to look again and think outside the box. Best, david

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@phoenix0509

@bustrbrwn22 , it was nice of you to reach out and show concern about my eye conditions. At the moment the eyes are stable, I do have some photophobia (shooting stars) in right eye which show up when its dark inside or outside. For my dry eye syndrome I use Restasis (cyclosporin) eye drops per the Ophthalmologist. My biggest problem is pain in all extremities which is continuous since attempting to decrease my prednisone that I take for Polymyalgia Rheumatica. Which has lead me to question the original diagnosis of PMR. I am trying to be seen at Johns Hopkins in Baltimore for this widespread radiculopathy like pain. So if anybody has a connection to Neurology or Neurosurgery at JH. send me a note. Initial review of neck does not show obvious problems. Got to look again and think outside the box. Best, david

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@phoenix0509 Best of luck to you, sir. 🍀

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@rwinney

@phoenix0509 Best of luck to you, sir. 🍀

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@rwinney , Rachel ,Thank You. Johns Hopkins is closer to me (6 hr drive from upper NY state) otherwise I would go to Mayo, Rochester,Mn. Its all about convenience and luck !! I see what you go through each day Rachel and your a trooper. You also keep out spirits up !! Best, David

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@phoenix0509 I wish you luck in getting there! Keep persisting and advocating for yourself. It'll happen.

Aww, thanks David. I try. Here is a cute example of my motto! 😊

Have a pleasant day.
Rachel

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@phoenix0509

@rwinney , Rachel ,Thank You. Johns Hopkins is closer to me (6 hr drive from upper NY state) otherwise I would go to Mayo, Rochester,Mn. Its all about convenience and luck !! I see what you go through each day Rachel and your a trooper. You also keep out spirits up !! Best, David

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Please keep us posted - positive thoughts being sent your way

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@rwinney

@phoenix0509 I wish you luck in getting there! Keep persisting and advocating for yourself. It'll happen.

Aww, thanks David. I try. Here is a cute example of my motto! 😊

Have a pleasant day.
Rachel

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@rwinney Oh Rachel, that is awfully cute! (And kinda moving...)

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@phoenix0509

@bustrbrwn22 , it was nice of you to reach out and show concern about my eye conditions. At the moment the eyes are stable, I do have some photophobia (shooting stars) in right eye which show up when its dark inside or outside. For my dry eye syndrome I use Restasis (cyclosporin) eye drops per the Ophthalmologist. My biggest problem is pain in all extremities which is continuous since attempting to decrease my prednisone that I take for Polymyalgia Rheumatica. Which has lead me to question the original diagnosis of PMR. I am trying to be seen at Johns Hopkins in Baltimore for this widespread radiculopathy like pain. So if anybody has a connection to Neurology or Neurosurgery at JH. send me a note. Initial review of neck does not show obvious problems. Got to look again and think outside the box. Best, david

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@phoenix0509 David, Polymyalgia Rheumatica, radiculopathy, photopsia and dry eye, you have it all. Oh, and just for good measure, toss in peripheral neuropathy as well, you know, the kind that makes it almost impossible for you to function at all? Now you've got the complete package. Gee Whillikers David, what's the deal anyway? You must've been one bad hombre in another life. Did you steal kid's Halloween candy and throw dirt balls at sweet little old ladies walking down the street?

Just my way of saying I hope you get an in to JH. Feel free to show them this post. Or don't, better yet. 😊 Cheers, Hank

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