Eyes and Neuropathy

@avmcbellar Tonight I went out on the deck to listen to the frogs and insects and to look at the stars. When my wife came out to join me she said that there were lots of stars. I replied that I could see twice as many.

Our place is enough higher than town that we can see the whole valley. The first thing I saw was a light a few miles away, with a second light above it. I feel like the prism has already stopped doing its job. I wonder if it gets worse when my eyes are tired, or I've been doing stuff on my phone.

We'll see what happens.

Jim

As you know Rachel, Linda has Fuchs as well as photophobia and she also has dry eye. The photophobia is getting progressively worse as is the Fuchs. Her eyesight is not great but her eye doctor has told her she should wait for the corneal transplants for the Fuchs until she needs to have her cataracts dealt with, whenever (he decides) that will be. But for the dry eye Linda takes a product called MURO 128 5 Percent SOLUTION which helps her a lot. I think she uses it once or twice per day. Thanks for the links, will take a look at them Hank.

Hi Hank. Wanted to connect with you so I jumped back to this discussion. Has Linda had a skin punch biopsy to diagnose her SFN? Cant remember.

The reason I ask is because I discovered a while back there is another means of testing for SFN and that is via Cornea Confocal Microscopy. It's a very expensive piece of equipment, and on the newer side of testing, that not only diagnoses but, also offers the ability to examine severity of progression and possible regeneration.

Last year I was on a mission to find who had the microscope because the cornea holds the greatest # of small nerve fibers in the whole body and given my neuropathy, photophobia, and hyper sensitivity ... I thought it may be a vital test to help piece together my issues more direct and in depth. My neurologist brushed it off and said ask your eye doc. My cornea specialist said the microscope was too expensive to purchase. So, I gave up and dropped the thought. Until recently.

I will attach a link or two for your review. I thought of Linda because it mentions chemo induced neuropathy (among others) and I think offers clarity for neuropathy patients. I am scheduled 7/14 to meet with (a 2nd) Neuro Opthemologist, that I tracked down, who is willing to review my case and weigh in on whether this is a worthy cause for me. He is on the board of a local university hospital that offers Cornea Confocal Microscopy. Maybe I'm in over my head with playing Dr but it does not appear to be rocket science so its worth a shot. If I'm wrong, I'm wrong...nothing ventured, nothing gained. Just wanted to share. I will be curious on your thoughts after reading and researching.
https://www.nature.com/articles/s41598-018-23107-w

Hi Hank. Wanted to connect with you so I jumped back to this discussion. Has Linda had a skin punch biopsy to diagnose her SFN? Cant remember.

The reason I ask is because I discovered a while back there is another means of testing for SFN and that is via Cornea Confocal Microscopy. It's a very expensive piece of equipment, and on the newer side of testing, that not only diagnoses but, also offers the ability to examine severity of progression and possible regeneration.

Last year I was on a mission to find who had the microscope because the cornea holds the greatest # of small nerve fibers in the whole body and given my neuropathy, photophobia, and hyper sensitivity ... I thought it may be a vital test to help piece together my issues more direct and in depth. My neurologist brushed it off and said ask your eye doc. My cornea specialist said the microscope was too expensive to purchase. So, I gave up and dropped the thought. Until recently.

I will attach a link or two for your review. I thought of Linda because it mentions chemo induced neuropathy (among others) and I think offers clarity for neuropathy patients. I am scheduled 7/14 to meet with (a 2nd) Neuro Opthemologist, that I tracked down, who is willing to review my case and weigh in on whether this is a worthy cause for me. He is on the board of a local university hospital that offers Cornea Confocal Microscopy. Maybe I'm in over my head with playing Dr but it does not appear to be rocket science so its worth a shot. If I'm wrong, I'm wrong...nothing ventured, nothing gained. Just wanted to share. I will be curious on your thoughts after reading and researching.
https://www.nature.com/articles/s41598-018-23107-w

Hi Rachel, thanks for thinking of us in regards to this. It seems clear that this non-invasive approach is a much better way to identify SFN that the skin biopsy method. Which would make it something to try and have done if the equipment were available, which you're saying is not the case everywhere. I will talk to Linda about this tomorrow. No, she has not had a skin punch biopsy. She has never seen a neurologist either and has never been clinically diagnosed with PN.

You know, my first thought about diagnosing SFN has always been what is the advantage to knowing that? She got slammed with PN two days after her second chemo infusion and we just kind of relied on internet research to find out about it from there. All of her doctors were saying "Oh that will go away after the chemo is over". We were both skeptical of that statement. And what I found online was that many people did say it might gradually diminish over time but barring that happening there were not really any treatments for chronic PN. In the NCBI article they mention that CCM would help "anticipate deterioration, and assess new therapies". Linda has already been deteriorating gradually over the past six years and is likely to continue it seems. And it also seems like the way SFN is mostly treated is with pain medications which Linda mostly can not tolerate. The most hopeful thing to come along lately seems to be these pain reducing nerve stimulator techniques people are trying.

On the other hand, knowing that this technique is non invasive as well as more accurate than other methods definitely weighs in its favor. There would be value in having it done just to have the knowledge gained by it, so if this were available to us I think I would encourage Linda to have it done. It's certainly an interesting approach to diagnosis. Thanks for this info and the links to the articles Rachel. One final thing: did you happen to locate any of these CCM microscopes? Best, Hank

@jesfactsmon Yes, Albany Medical College hospital in my area has one (as per the Neuro Opthamologist I will be seeing). He is a board member there and once he and I meet in July, he will assess my situation and hopefully help me get tested. Or I will find out it's of no real value. It's no surprise by now that I'm a person who likes knowing things.... every layer, every angle that may hold hope or promise.

I will say this.... I'm slowly feeling improvement in certain areas of my body. I havent wanted to say it before because it hadnt lasted but, my hands now feel almost 100% normal. They are better without repercussions! Other parts show signs of improvement yet continue to have different repercussions...pain, burning. aching, weakness and minimal but occasional odd sensations like, ripping, tearing, vibration. Ive been able to get a little more driving in but it's a catch 22. I think I've been braver to try. I have been mentally and physically pushing myself which has brought pain but satisfaction. For every pain controlled moment that allows me to experience socializing and minimal participation in activity, I feel stronger. I've come to better terms that with a day such as that, I will pay the next day but get back up swinging the day after that (you all hear me, neuropathy sufferers). Yesterday I went on a date with my husband and slowly walked about 2 blocks for lunch in a beautiful little lakeside village. Pain meds disguised and allowed and I took advantage.🤗
It wasnt pretty last night, nor today but I did it! Desire is so important, I'm finding.

I seem to be the only one (or very few) that has SFN from a vitamin deficiency so it's hard for me to connect with others experiencing my particular journey. It is my long term hope and goal that given time (as my neurologist mentioned when first diagnosed) my pain may diminish and nerves regenerate from regulating deficiency. The fact that the odd, painful, annoying sensations dont harass me like they have over the past 2 years, tells me either nerves are regenerating, my supplement protocol is helping in that area or on a slim chance, Lyrica helps (which is not my gut feeling). Maybe all the above.

Anyhow, I may be the fortunate one in the fact that I had a treatable underlying cause. Only time will tell. The past several years have been rapid shots fired and IF I've developed Pain Central Sensitization...I am working hard on my own (pre-Mayo) to recreate neurons, build new pathways and re-teach my brain to come down from the chaos. If I'm wrong, I may consider pain stimulator implants in the future but, I still find that I want to experience Cornea Confocal Microscopy to look deeper into the layers for deterioration or a regeneration path. Call me a dreamer!

I kind of hear you about Linda and the "it is what it is" theory. When someone has not walked in others shoes, they can not judge. However, I will always keep Linda in mind and remain hopeful for she as well as others. I hold out hope that a pain stimulator implant may be her answer and am glad she (you) have Mayo Connect and its wonderful people to guide you.

Hey, thanks for being my sounding board this morning! Have a wonderful day and hello to Linda.

Be well,
Rachel

You be well also Rachel. I am really happy about this new information that you might be improving somewhat. Boy wouldn't that be something? I went for a walk after my last post to you and it occurred to me that gaining any new knowledge can sometimes lead to a surprising result. I have long thought and occasionally have told others that I believe that energy is never wasted. If you put in the effort the thing that you seek might not come from the place you are expecting it from but it may come from somewhere else entirely. I am glad things seem to be looking up for you, it's apparent you HAVE put in the effort in spades! I am hoping Linda wants to do this CCM exam and will see if I can find out if there is one of those microscopes in our area. All my best to you, Hank

@johnbishop Hi John. Do you have any further knowledge on Cornea Confocal Microscopy (which I spoke of in my recent post to Hank)? I may start a new thread to see if anyone on Connect has utilized it for their neuropathy diagnosis or progression. I'm sure Mayo Clinic offers it. I can attach links as well. Your thoughts sir?