Eyes and Neuropathy

Posted by rwinney @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.

@avmcbellar

Hi Hank, always a pleasure speaking with you. Haha, remember this was during a time when there was no internet and no cell phones! Australia was not common knowledge back then. I had cousins who visited. My parents owned a family restaurant at that time so they were introduced to many of our customers. People had no idea of the country they had come from, only knew my cousins had a funny accent.
I enjoyed learning new things so I spent a lot of time at my local library taking out non fictional books. Who would go to the library to learn about Australia? The country was unheard of on the TV national news. There was no cable then either. It is amazing how far we have come. Now everyone knows the country Australia and its popular actors/actresses. I believe technology has made a great impact in our society but I also see the downfalls. I am sorry to say I feel the movie “Idiocracy” is becoming a reality with the newer generations. During our time( when we were younger) we learned to do things the hard way without technology. I understand the basics and can speed up getting results through the use of technology. The younger generations are lost without technology today because they can’t do without cells phones or internet. I still have my slide rule, lol, an antique now. I know the operations of math and can figure out results quicker with a calculator but these kids have no clue how results are derived.
For a few weeks the emails stopped coming, so I couldn’t communicate with anyone on Connect. This happened once before for a few months but luckily the emails came back a lot sooner. Thanks to John, he has informed me who to contact if it should happen again.
I was thinking about you a few weeks earlier when I purchased Omega 3 fish oil for a pet rescue dog with joint issues. Yes, even my dog takes it, lol! Mini Pearl is doing much better now, much more alert. I took her off drugs that made her drowsy. I know people are trying to help but common! Yes, I am an advocate for health issues especially when it comes to my elderly mother. I am fortunate she listens to me at her age, 90. She is pretty sharp still despite her ailments. From time to time my husband and I will visit her at her apartment. Because I don’t drive, I do everything for her remotely. She still can ambulate and be somewhat independent. It is her low vision and her lack of understanding the english language that sets her back. We communicate using the internet daily. I taught her to use the Ipad and her cell phone. We both learn from each others experiences. As long as the medical staff knows you are knowledgeable they won’t mess with you. Sadly, the bottom line is the Benjamins. They will do what is best for them in that regards unless you speak out.
Great to see you are an advocate for yourself and Linda. Your research will pay off. I found many times doctors were not able to answer questions simply because they did not know. That is why I take it upon myself to learn what is best for me. I do the same for my mother. I tell her to try different things as you do with Linda.
By the way, this morning I took the ALA with food 30 mins prior to the ALC again with food. No issues so far. Before the daily 600 mg ALA gave me an energy boost. Now with the 300 mg ALA and 1200 mg ALC daily I hope to gain a bigger energy boost.
Hope you and Linda had a good day today. No worries when you get to the responses with the Emails. Take care, Toni

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@jesfactsmon Hank I had posted a reply to one of your posts, ”I don’t know why…..” on Monday, Labor Day. I know you are busy with the emails, so no worries. Just letting you know. By the way, I am sending a thank you to you and Linda for the additional info on the tea. Good to know. I was wondering about that. I plan to sip it iced. I wish I had the tea sooner to try though. 🙁 I got a headache again today. I get the pain behind my bad eye now as well. Don’t know if it is caused by the vision changes related to the eye exercises. The good news is it only lasts a day or 2. Tomorrow is another day. Toni

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@avmcbellar

Hi Hank, always a pleasure speaking with you. Haha, remember this was during a time when there was no internet and no cell phones! Australia was not common knowledge back then. I had cousins who visited. My parents owned a family restaurant at that time so they were introduced to many of our customers. People had no idea of the country they had come from, only knew my cousins had a funny accent.
I enjoyed learning new things so I spent a lot of time at my local library taking out non fictional books. Who would go to the library to learn about Australia? The country was unheard of on the TV national news. There was no cable then either. It is amazing how far we have come. Now everyone knows the country Australia and its popular actors/actresses. I believe technology has made a great impact in our society but I also see the downfalls. I am sorry to say I feel the movie “Idiocracy” is becoming a reality with the newer generations. During our time( when we were younger) we learned to do things the hard way without technology. I understand the basics and can speed up getting results through the use of technology. The younger generations are lost without technology today because they can’t do without cells phones or internet. I still have my slide rule, lol, an antique now. I know the operations of math and can figure out results quicker with a calculator but these kids have no clue how results are derived.
For a few weeks the emails stopped coming, so I couldn’t communicate with anyone on Connect. This happened once before for a few months but luckily the emails came back a lot sooner. Thanks to John, he has informed me who to contact if it should happen again.
I was thinking about you a few weeks earlier when I purchased Omega 3 fish oil for a pet rescue dog with joint issues. Yes, even my dog takes it, lol! Mini Pearl is doing much better now, much more alert. I took her off drugs that made her drowsy. I know people are trying to help but common! Yes, I am an advocate for health issues especially when it comes to my elderly mother. I am fortunate she listens to me at her age, 90. She is pretty sharp still despite her ailments. From time to time my husband and I will visit her at her apartment. Because I don’t drive, I do everything for her remotely. She still can ambulate and be somewhat independent. It is her low vision and her lack of understanding the english language that sets her back. We communicate using the internet daily. I taught her to use the Ipad and her cell phone. We both learn from each others experiences. As long as the medical staff knows you are knowledgeable they won’t mess with you. Sadly, the bottom line is the Benjamins. They will do what is best for them in that regards unless you speak out.
Great to see you are an advocate for yourself and Linda. Your research will pay off. I found many times doctors were not able to answer questions simply because they did not know. That is why I take it upon myself to learn what is best for me. I do the same for my mother. I tell her to try different things as you do with Linda.
By the way, this morning I took the ALA with food 30 mins prior to the ALC again with food. No issues so far. Before the daily 600 mg ALA gave me an energy boost. Now with the 300 mg ALA and 1200 mg ALC daily I hope to gain a bigger energy boost.
Hope you and Linda had a good day today. No worries when you get to the responses with the Emails. Take care, Toni

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@avmcbellar
Thank-you for making me aware of this message. I try to view every new post each morning since the previous day but it is amazing how many I still miss. I'm so glad you pointed me back to this one, I would not want to miss it for the world! Let me address in order some things you mentioned.

I can hardly believe how much has changed since, say, (gosh pick any date before the 90's or so) 1978 when we were married. I feel like I have lived two lives in two different times of history. I think I have lived through the time of the most dramatic changes in the history of our planet, technology-wise and culturally. Culture shock abounds now, and even more so since the start of covid19.

Idiocracy. Yes!

Omega3 – the image of an innocent seal face came to me immediately when I saw that word "seal" on the AUUM website. So much for that. I remember when my wife was contemplating starting to eat fish again a few years back. Then she saw the cartoon "Finding Nemo". So much for that idea. Couldn't eat Nemo!

So nice your mom is still as functional as she sounds. Mine too. She is 98, gorgeous, stylish, and still very with it. My sister lives with her and watches over her. It's such a tremendous joy that she is living, I just hope I get to visit again while she is still healthy and alive. She is in Connecticut. We are in Tennessee. We video chat but I miss her terribly anyway. You said your mom has trouble with English. I thought she was Australian? Maybe I missed something, I do that a lot.

Linda feels the best thing she can do for herself is avoid drugs. Between that and her allergy to OTC stuff, she is pretty much drug free. I got her low dose naltrexone recently, not sure when/if she will ever take it. Latest is she is trying PEA now based on inputs from @elizm some of who's posts I really enjoyed reading recently. Smart lady.

Thanks again for pointing me to your post Toni. Best to you, Hank

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@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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