Eyes and Neuropathy

Posted by rwinney @rwinney, Jun 17 7:11am

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.

@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 , Rachel , this is perfect. !!

Liked by lorirenee1, rwinney

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@jesfactsmon

@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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@jesfactsmon , Hank, you had me laughing…I do hope to sort these painful symptoms out at Johns Hopkins. Send Jokes !!! Best, David

Liked by Hank

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Hi all, Today's member spotlight features @rwinney, a member well known to members of the Eye Conditions group. Read her interview to learn more about Rachel: meaningful moments she's had on Mayo Clinic Connect, what motivates and inspires her, and which Hollywood actor would play her in a movie about her life.

– Where there's a Winney, there's a way: Meet @rwinney https://connect.mayoclinic.org/page/about-connect/newsfeed-post/where-theres-a-winney-theres-a-way-meet-rwinney/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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@jesfactsmon

@avmcbellar forgot to type in the @avmcbellar in my previous post but nonetheless hope you to read it.
Hank

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Hi Hank @jesfactsmon. Thank you for your last reply. I am so glad Linda found the Shifa tea for relief. It certainly helps. On the second day, my headache shifted to the other side(left) of my hear. No matter which side of my head is involved for my headache, I get a pain behind the back of my bad(right) eye. It makes it harder to do things because I feel miserable. I tried Tylenol long time ago for my headache and it did absolutely nothing. Needless to say, I don’t bother with any pain meds.
Thank you. I have been doing my eye exercises daily for almost 4 months now. I did notice that the adjustment time for the bad eye to align with the other eye has become less but it still causes motion sickness. I feel the change in my ears more so now. It is similar to the feeling after vestibular exercises the physical therapist did with me to move the crystals in my ears to regain my balance. It was a very uncomfortable feeling because it made me dizzier. After a few seconds it would go away. I did get the headache the next day.
I found an app to use daily for the eye exercises. I repeat an exercise 4 times. I will increase the repetition at 6 months then 9 months. I plan to stop at 12 months or when I do not see any more benefits. I will let my eyes rest for several months before any strabismus surgery since the results will be permanent.
I agree neuroplasticity is an interesting subject. The only problem is not much is known. I basically learn on my own through trial and error. It does take a lot of discipline and learning about yourself. I listen to medical experts and the results of medical research to determine my next moves. It is hard to trust doctors when the certainty of their motivation is not known. Is it monetary or genuine caring? It is scary because the medical staff is mostly younger than us. We have seen the behavior of the generations following us. Being an advocate for yourself has become even more important. It is hard but that is what makes it worth it! Take care of yourselves. Toni

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hi I'm currently seeing a neuro Optamolgist for optic neuropathy, has also (been called atrophy and optic neuritis)- for approx 8 months. Ive had had much blood work, an MRI, and CT SCAN. My eye doc says he can't figure out why an otherwise healthy person would have optic nerve damage. He said there was no cure, we just monitor progression. He said steroids were an option thats not guaranteed, but could help, but we were gonna do tests to see if we can figure whats causing it, first. All my test has come back negative- including a visit to a Rheumatologist and Hemotologist. The last time I spoke with my eye doctor, he mentioned to call to discuss the eye steroids-after my hemotologist appt-that was nearly a month ago and I haven't been able to reach him since. So now I'm just hanging until my follow up appt that in 3 weeks. I feel like my faith is being tested for a reason, but I'm kinda discouraged at how bad this could get before my testimony coms to fruition.

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@taldavs

hi I'm currently seeing a neuro Optamolgist for optic neuropathy, has also (been called atrophy and optic neuritis)- for approx 8 months. Ive had had much blood work, an MRI, and CT SCAN. My eye doc says he can't figure out why an otherwise healthy person would have optic nerve damage. He said there was no cure, we just monitor progression. He said steroids were an option thats not guaranteed, but could help, but we were gonna do tests to see if we can figure whats causing it, first. All my test has come back negative- including a visit to a Rheumatologist and Hemotologist. The last time I spoke with my eye doctor, he mentioned to call to discuss the eye steroids-after my hemotologist appt-that was nearly a month ago and I haven't been able to reach him since. So now I'm just hanging until my follow up appt that in 3 weeks. I feel like my faith is being tested for a reason, but I'm kinda discouraged at how bad this could get before my testimony coms to fruition.

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Hello @taldavs, Welcome to Mayo Clinic Connect. I know it can be frustrating when the doctors are not able to diagnose the cause of your optic nerve damage. Have you thought about seeking a second opinion or help at a teaching hospital or a major hospital like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@taldavs

hi I'm currently seeing a neuro Optamolgist for optic neuropathy, has also (been called atrophy and optic neuritis)- for approx 8 months. Ive had had much blood work, an MRI, and CT SCAN. My eye doc says he can't figure out why an otherwise healthy person would have optic nerve damage. He said there was no cure, we just monitor progression. He said steroids were an option thats not guaranteed, but could help, but we were gonna do tests to see if we can figure whats causing it, first. All my test has come back negative- including a visit to a Rheumatologist and Hemotologist. The last time I spoke with my eye doctor, he mentioned to call to discuss the eye steroids-after my hemotologist appt-that was nearly a month ago and I haven't been able to reach him since. So now I'm just hanging until my follow up appt that in 3 weeks. I feel like my faith is being tested for a reason, but I'm kinda discouraged at how bad this could get before my testimony coms to fruition.

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@taldavs
Hi, I'd also like to welcome you here. You joined back in January so perhaps you have been monitoring the forum somewhat already. I also joined then and I can tell you that just from what I have heard from others there are a lot of things that can cause neuropathy, if that is what you have. Besides obvious causes like diabetes and chemo, one thing that seems to be a cause for a lot of people is surgery. Another thing believe it or not are injections, any kind of injections. There are many other things such as too much B6 or too little B12 in your system. So just be open to a wide realm of possible causes is my point. So, what symptoms have you had so far? Hank

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