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Eyes and Neuropathy
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.
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@tcokeefe I understand. Sounds like it still may be a difficult diagnosis to resolve even with nerve regeneration because of the continued loss, unless circulation is improved. Will your condition stabilize so you won’t keep experiencing a decline in vision? I hope the prism continues to help with your double vision.
No it will not. I've accepted all this years ago.
@tcokeefe acceptance allows for the ability to better deal with the situation but there is nothing preventing you from searching for any advancements in the meantime. Who knows what the next year may bring. All we can is to hope for baby steps to a resolution or improvements of our condition. Keep trying to find answers!
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1 Reaction@tcokeefe Am I correct in assuming that you've discussed surgery with a neuro-ophthalmologist surgeon? How long have you had the prism? I had one ground into my right lens two months ago, and I'm wondering how long I can expect it to correct my double vision. The ophthalmologist said that I would have to learn to live with it, but I believe that there are more options - one being a fresh prism in a new lens. I don't think that every doctor can keep up on all the possibilities.
Jim
I have discussed surgery and they feel that there is a high risk that I’ll end up worse than before. They say that surgery is advisable only when you have a very large degree of turn in the eye, and I do not. I have enough to give me double vision but not enough to warrant the risk of surgery. I am seeing one of the best in the country believe me
Hello all,
I went to a 2nd neuro opthamologist yesterday. My first was in 2015 and I had not been diagnosed with SFN then. Because my photophobia continues to debilitate me and dry eye seems to be gaining ground, I thought time for another discussion and look...new theories, new meds, new therapies, new Dr., ...who knows??? In addition, I was seeking info on Corneal Confocal Microscopy in hopes of being progressive. Here's what I learned:
1. After being tested, my dry eye is of mild to moderate status
2. It is believed that I suffer most from neuropathic pain/ Central Sensitization
3. Corneal Confocal Microscopy, from this Drs perspective, is not believed to be of much benefit to me nor did he have the microscope or think worthy of pusuing at the local hospital that does have it. (I will see a new Neurologist at that hospital next week and pursue again)
Here is what I was offered:
1. FL-41 (rose/crimson tinted glasses). Axon Optics was suggested but it appears there are other vendor options
2. Novo Tears - Hunt Valley Pharmacy = plasma from your blood draw is recreated into your own natural tear drops in a bottle. 6 month supply = approx $400
3. Restatis or Xiidra script
4. Inveltys (loteprednol etabonate othamalic suspension) 1% drops. Corticosteroids. Free sample given to me for chronic pain of eye. Although I've been on Prednisolone drops since transplants so I need to look into that today with my current prescribing Dr. Doubt I can do both and this is why I hate things being given to me on a Drs way out the door....here, try this!
Perhaps the best news of my visit was the fact that this Dr. picked up his phone and voice to text a message to a Mayo Clinic Opthamologist, about my condition since corneal surgery 7 years ago, and told him I am coming to Mayo rehab, FL in October. The goal is to have me seen while there! Also, Mayo has the CCM and maybe it might be worthy of a look.
I'm going to keep positive on this whole plan but am not holding my breath completely as I know how these good intentions sometimes go. Time will tell!
As with most anticipated Dr visits...I go prepared with lists and questions and sure enough wait (I was there 2 1/2 hours total), locked in a 10x10 room for 1 hr alone and waiting for this Dr, uncomfortable from body pain and multiple flares from uncomfortable conditions and positions. My point is, he came in like wild fire...threw a lot at me, was all over the place, in and out, with another patient, etc... You guys know the drill! 🤪
I will be interested to hear of anyone's experience or knowledge of the products above (except Restatis/Xiidra as we've covered those products quite well...plus, I cant afford them anyway - haha!)
Have a comfortable day everyone.
Be well,
Rachel
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5 ReactionsHere's the Novo tears link if you want to explore:
https://www.hvpcc.com/novotears/
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1 ReactionHave you had your tear ducks plugged? It completely changed my life overnight years ago. For the better.
Rachel @rwinney that is terrific news!! I look forward to hearing about your appointment at Mayo Jacksonville and seeing a Mayo opthamologist.
I was on a 4 month waiting list to see a Mayo opthamologist and being a little frustrated about the wait list and not being able to make an appointment with them in 2017 and 2019 (having to see a local regular eye doctor for glasses), I decided to see if I could get an appointment online. I requested one and then missed their call. Called them back late in the day last Friday and asked them what's the deal with the waiting list and does it change often. The lady told me it does change and I asked do you call people on the list when an opening occurs...then explained again I had an exam in 2015 where the doctor said I had the start of cataracts but only needed new glasses. Also told her I tried to see them in 2019 due to vision problems and was unable to make an appointment. The local eye doctor said she would rate my cataracts a 2 on a scale of 1 to 4 with 4 being bad. She said let me take a look at the schedule. Then she said how about July 15th at 7:30 am? Needless to say I said YES!
My sister who is 6 years younger than me just had cataract surgery on both of her eyes and had lenses implanted. She said it's strange waking up and reaching for her glasses that she no longer needs. That gives me lots of hope
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4 ReactionsGee Rachel, right off the bat I'd nix the rose colored glasses. I have learned enough about you to know that you would never want to view the world through those. Not sure about the other stuff. Best to you, Hank
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