Eyes and Neuropathy

Please keep me updated on what you find out. I am actually scheduled for cataract surgery next week and the other eye in a couple more weeks. I was initially informed at last year's eye appointment that I had started developing cataracts. Over this past year, my eyesight has gotten progressively worse with alot of sporadic blurriness, light sensitivity and just unable to focus with or without my prescription trifocals on well enough to read anything. I was diagnosed with peripheral neuropathy back around 2012 or so at Mayo and that too has been progressively getting worse. I take Gabapentin once a day in the evening because I can't focus enough to work if I take any during the day. The neuropathy, I believe started slowly after I had a spinal fusion in 2002. After my surgery, while still at home recuperating, I would get horrendous pains in my feet and would have to get up out of bed and walk around sometimes for up to an hour to wait on it to ease up enough to be able to get back to sleep. Within a few years, my feet hurt alot. I thought it was something else going on with my feet, not thinking it had to do with my fusion. By 2007, it got to the point that I could hardly walk around for very long or stand for very long without my feet hurting so bad. Then the strange combination of numbness, burning, ultra sensitivity started and has ever since just been getting worse and moving further up and around my feet. Now the tingling is in the lower part of each leg. My feet hurt CONSTANTLY!! My husband thinks I'm nuts because I sweep our floors pretty much every day, sometimes more than once. I can feel everything, tiny crumbs, grains of salt or sand, everything. They don't feel like tiny crumbs or grains of salt or sand, they feel like when someone with normal feet steps on a Lego. Not fun. Anyway, I'd love to hear about any relationship between neuropathy and the progressively worsening vision. Thank you! Good luck!

@pjfrahm and @jimhd, I discussed my cataract eye vision problem with my primary care doc and asked if he can get me an appointment at Rochester Mayo where they first diagnosed the start of cataracts in 2015. He requested an appointment for me but they could only put me on a waiting list and told me they would get back with me in about 4 months. I was disappointed but will wait to see if they schedule an appointment after 4 months. I tried to see them in 2019 when my eyesight was getting worse and more sensitive to light and night driving and they would not even put me on a waiting list since they were booked out for over a year. It's really hard for me to believe. I really love Mayo but this kind of year to year scheduling problem is not very patient friendly.

My sister who is six years younger than I am just had cataract surgery in her right eye after having the surgery in her left eye last month. Happy to hear that both her cataract surgeries went well.

@pjfrahm

I'm really sorry for your pain. At this point, you could be describing how my feet hurt, though it hasn't been this bad as long as yours.

Gabapentin was no help for me. But then, nothing else has, either.

When I talk with my various specialists - eyes, swallowing, ED, bladder, muscle tone, balance - I ask them if the problem is related to neuropathy. The answer is always "maybe. Could be." Even the head of neurology at a very good teaching hospital said those helpful words.

I had cataract surgery on both eyes a year ago, and my double vision has become progressively worse since then. I brought it up several years ago, but at my last visit he believed me and had prisms ground in the right lens of my glasses, which helped for awhile. Esophageal dysmotility could also have neuropathic involvement, as well as tinnitus, my vision getting blurry until I get them to refocus.

There are different kinds of neuropathy, of course, which really confuses diagnosis and treatment. Has a doctor talked with you about autonomic neuropathy?

I've tried a few medications that reduced the pain, but they either had unacceptable side effects, or they quit working. Sorry. Not very encouraging.

PN seems to be uncharted territory to a great extent. Treatment seems to be a hit and miss process.

I don't know how to send you to a discussion thread about the neuropathy journey stories, but I'll tag @johnbishop to help me out. I surely hope that you can find a treatment that will give you some relief from the constant pain.

Jim

@pjfrahm and @jimhd, I discussed my cataract eye vision problem with my primary care doc and asked if he can get me an appointment at Rochester Mayo where they first diagnosed the start of cataracts in 2015. He requested an appointment for me but they could only put me on a waiting list and told me they would get back with me in about 4 months. I was disappointed but will wait to see if they schedule an appointment after 4 months. I tried to see them in 2019 when my eyesight was getting worse and more sensitive to light and night driving and they would not even put me on a waiting list since they were booked out for over a year. It's really hard for me to believe. I really love Mayo but this kind of year to year scheduling problem is not very patient friendly.

My sister who is six years younger than I am just had cataract surgery in her right eye after having the surgery in her left eye last month. Happy to hear that both her cataract surgeries went well.

THANK YOU!!!

Hi Hank, I understand sometimes we have to make sacrifices for our health. I always look for alternate ways. If I have a choice I prefer not using any animal sources, especially seals. I cannot justify taking a supplement purely on chance I.e. without any medical evidence. I do believe there is a difference between the two. It is the seals that are the mammals. Their quantity is greatly outnumbered by salmon or fish which is farmed. Besides the fish oil, I eat walnuts and flax seeds. A vegetarian diet can be a very healthy diet. Fantastic! I believe it can help in many health issues.

@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

@avmcbellar I'm going to jump in here you mentioned farm raised salmon that is the worst kind you can eat . To many chemicals in the water and they don't have fresh water changes or running water in those flutes . Not sure that is the name but they remind me of the coal coming on the convaerbelt . No farm raised salmon at all never buy them .

Hi @lioness I agree. Salmon farm raised is not the best because it also contains hormones used in their feed. But we do our best in making our selection. Natural waters are not as clean as they once were either. We have to make a choice between salmon in natural waters which commonly contains pollutants or farm raised.

@jimhd Hi Jim, just as an FYI, there are youtube videos about how to share links in case you'd like to learn. I saw one that is just under 2 minutes long which is a pretty good nutshell version. Here it is: