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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.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 8, 2020
In reply to @avmcbellar "Good luck John with your visit next week! Let’s hope cataracts are to blame for your..." + (show)
@avmcbellar

Good luck John with your visit next week! Let’s hope cataracts are to blame for your vision problems. Keep us in the loop of what you find out. Wish you well.

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Thanks! I will let everyone know how it turns out next week.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 8, 2020
In reply to @tcokeefe "Have you had your tear ducks plugged? It completely changed my life overnight years ago. For..." + (show)
@tcokeefe

Have you had your tear ducks plugged? It completely changed my life overnight years ago. For the better.

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No, I have not. I'm happy you found relief from the procedure. Wonderful!

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pjfrahm | @pjfrahm | Jul 15, 2020
In reply to @jimhd "@pjfrahm I mostly use my phone for emailing and shopping, and I don't know how to..." + (show)
@jimhd

@pjfrahm I mostly use my phone for emailing and shopping, and I don't know how to share links. I mentioned a discussion, and see it in the neuropathy group. The discussion is Member Neuropathy Journey Stories: What's Yours?

Having multiple issues sure can make it a challenge to treat them all without drug interactions. Last week I met with a neurospecialist to discuss the possibility of a DRG stimulator implant, but before we got to that, she showed me the MRI I had done several months ago. I was supposed to have spoken with her about it long ago, but Covid19 delayed everything. She showed me the spinal stenosis which is impinging the cluster of nerves in my spinal column, and quite possibly causing some of the pain in my feet. I'd love to have the surgery done ASAP, but I can't be recovering from surgery when I have so much to do all summer. I can't just tell the garden and landscaping to understand why they won't be getting watered. I am hopeful that the work on my back will reduce my pain. It sounds like you need a great doctor like this neurospecialist. She doesn't limit her perspective to only the small field of neuropathy, or only to treating the symptoms.

So, I'm enduring the pain until the end of September. It helps to have a goal like that.

Gotta get to sleep.

Jim

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That's great she has some plan to help you. If you don't mind, could you tell me which neurospecialist you are seeing? I've been seeing a neurologist at Mayo and each time I've brought up the connection between my spine issues, he looks at me like I'm njuts and never bothers to answer me. Its extremely frustrating. I KNOW there has to be a connection as my issues with my feet didn't start until after I had a spinal fusion in 2002 and has progressively gotten worse over the years. I had some pretty strange tests done at Mayo at first to attempt to figure out the extent of it all at that time. There was a heat test and of course a couple EMG's (which I HATE) and another sensory test. I never heard any results or any suggestions on the results of any of those tests. Anyway, I would love to get some answers.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 15, 2020

Hello everyone, I had my appointment this morning with the Mayo ophthalmologist and I'm scheduled to have cataract surgery done on my right eye July 31st. They also scheduled me for a COVID test 2 days prior to the surgery which they do the nasal swab and a blood test...and reschedule the surgery if you test positive. I'm really kind of excited now that my daughter said she would take the 31st off and be my chauffeur. I was kind of surprised that they are doing my right eye first since it's the better of the two and the master eye that I use the most. He said that they usually do the main eye first because you will see better. Also because I have an astigmatism in both eyes but the right eye is not as bad as the left. The downside for having an astigmatism is that the replacement lens that fix it are not covered by insurance.

Color me a happy camper!

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3 replies
Hank | @jesfactsmon | Jul 15, 2020
In reply to @johnbishop "Hello everyone, I had my appointment this morning with the Mayo ophthalmologist and I'm scheduled to..." + (show)
@johnbishop

Hello everyone, I had my appointment this morning with the Mayo ophthalmologist and I'm scheduled to have cataract surgery done on my right eye July 31st. They also scheduled me for a COVID test 2 days prior to the surgery which they do the nasal swab and a blood test...and reschedule the surgery if you test positive. I'm really kind of excited now that my daughter said she would take the 31st off and be my chauffeur. I was kind of surprised that they are doing my right eye first since it's the better of the two and the master eye that I use the most. He said that they usually do the main eye first because you will see better. Also because I have an astigmatism in both eyes but the right eye is not as bad as the left. The downside for having an astigmatism is that the replacement lens that fix it are not covered by insurance.

Color me a happy camper!

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Good news John. I hope it works out well for you. And the bright side of doing the better eye first is the bill's going to look kind of fuzzy to you ("Oh gee, that amount was $2000? I thought it said $200. Golly!") Best wishes for success John. Hank

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 15, 2020
In reply to @johnbishop "Hello everyone, I had my appointment this morning with the Mayo ophthalmologist and I'm scheduled to..." + (show)
@johnbishop

Hello everyone, I had my appointment this morning with the Mayo ophthalmologist and I'm scheduled to have cataract surgery done on my right eye July 31st. They also scheduled me for a COVID test 2 days prior to the surgery which they do the nasal swab and a blood test...and reschedule the surgery if you test positive. I'm really kind of excited now that my daughter said she would take the 31st off and be my chauffeur. I was kind of surprised that they are doing my right eye first since it's the better of the two and the master eye that I use the most. He said that they usually do the main eye first because you will see better. Also because I have an astigmatism in both eyes but the right eye is not as bad as the left. The downside for having an astigmatism is that the replacement lens that fix it are not covered by insurance.

Color me a happy camper!

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@johnbishop Awesome John! I cant wait to hear about your new bionic eye. You will begin to see a whole new and take even better photos of your birds! 😁

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lioness | @lioness | Jul 15, 2020
In reply to @johnbishop "Hello everyone, I had my appointment this morning with the Mayo ophthalmologist and I'm scheduled to..." + (show)
@johnbishop

Hello everyone, I had my appointment this morning with the Mayo ophthalmologist and I'm scheduled to have cataract surgery done on my right eye July 31st. They also scheduled me for a COVID test 2 days prior to the surgery which they do the nasal swab and a blood test...and reschedule the surgery if you test positive. I'm really kind of excited now that my daughter said she would take the 31st off and be my chauffeur. I was kind of surprised that they are doing my right eye first since it's the better of the two and the master eye that I use the most. He said that they usually do the main eye first because you will see better. Also because I have an astigmatism in both eyes but the right eye is not as bad as the left. The downside for having an astigmatism is that the replacement lens that fix it are not covered by insurance.

Color me a happy camper!

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@johnbishop So glad you have your date now we all will be here for you I had astigmatism also didn't go for the more expensive lens Dr told me he would flatten out the lens how can't remember that was in 2009 still see fine astigmatism and all I just went with a lady I think.I told you about 5he thickness of her cataract she 8s seeing better everyday you will too

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onamission | @onamission | Aug 21, 2020

rwinney, a deficiency of thiamine (B1) can be a cause of your peripheral neuropathy and eyes problems. Thiamine needs the cofactor magnesium.to change thiamine to it's active form. Thiamine deficiency has been linked to fatigue, loss of appetite and impaired cognition and pleural effusion. A high percentage of the population is deficient in magnesium. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists causes of magnesium loss in addition to the daily amounts and well absorbed forms. Also look into "nothing boring about boron" for It's benefits and it's ability to increase absorption and retension of magnesium. Research each of the B vitamins as they work better together. Benfotiamine is a fat soluble form that the body converts to thiamine offering important benefits for brain function and for the eyes too. The link below expands on thiamine. Always consult your health professional before using any supplement.
https://www.ncbi.nlm.nih.gov/books/NBK482360/

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2 replies
Hank | @jesfactsmon | Aug 22, 2020
In reply to @onamission "rwinney, a deficiency of thiamine (B1) can be a cause of your peripheral neuropathy and eyes..." + (show)
@onamission

rwinney, a deficiency of thiamine (B1) can be a cause of your peripheral neuropathy and eyes problems. Thiamine needs the cofactor magnesium.to change thiamine to it's active form. Thiamine deficiency has been linked to fatigue, loss of appetite and impaired cognition and pleural effusion. A high percentage of the population is deficient in magnesium. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists causes of magnesium loss in addition to the daily amounts and well absorbed forms. Also look into "nothing boring about boron" for It's benefits and it's ability to increase absorption and retension of magnesium. Research each of the B vitamins as they work better together. Benfotiamine is a fat soluble form that the body converts to thiamine offering important benefits for brain function and for the eyes too. The link below expands on thiamine. Always consult your health professional before using any supplement.
https://www.ncbi.nlm.nih.gov/books/NBK482360/

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@onamission
Thanks for this information. One thing you have done for me is open my eyes to boron which seems not to have had enough research done on it. I am considering adding a boron supplement to our diets (wife and myself) based on some admittedly fairly superficial research done over the past couple hours. One thing that got me was that there was a study done in 1994 showing a significant improvement in brain function as well as bone and joint health, but this did not spur further research for some reason (likely $$). But there seems to be enough info out there to indicate that boron can be beneficial in a number of ways, while at the same time it may be difficult to get enough into on's diet, especially older people who don't eat as much quantity or variety of foods.

Just curious: I briefly glanced through your posts and you seem to be quite knowledgeable regarding vitamins and minerals, particularly magnesium, but others also. I am wondering, did you have a career in this field, or what propelled you into gaining this knowledge? Thanks again, Hank

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 22, 2020
In reply to @onamission "rwinney, a deficiency of thiamine (B1) can be a cause of your peripheral neuropathy and eyes..." + (show)
@onamission

rwinney, a deficiency of thiamine (B1) can be a cause of your peripheral neuropathy and eyes problems. Thiamine needs the cofactor magnesium.to change thiamine to it's active form. Thiamine deficiency has been linked to fatigue, loss of appetite and impaired cognition and pleural effusion. A high percentage of the population is deficient in magnesium. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists causes of magnesium loss in addition to the daily amounts and well absorbed forms. Also look into "nothing boring about boron" for It's benefits and it's ability to increase absorption and retension of magnesium. Research each of the B vitamins as they work better together. Benfotiamine is a fat soluble form that the body converts to thiamine offering important benefits for brain function and for the eyes too. The link below expands on thiamine. Always consult your health professional before using any supplement.
https://www.ncbi.nlm.nih.gov/books/NBK482360/

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@onamission First off, I love your screen name! And second, yes, you do seem quite knowledgeable. Thanks so much for the info on vitamins. My cause of PN is B12 deficiency and eyes is cornea disease. I'll have to look back through all my blood testing and check for thiamine results as it affects eyes, as you state. I had an extensive workup and wasnt told otherwise regarding thiamine. I take a B Complex which has 100 mg of thiamine. I take 200 mg of magnesium per day. I'll research the others you mention. I believe I've read a bit about Boron but will get back at it! Thanks again. Hope you are well.
Rachel

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