Eyes and Neuropathy

@rwinney , Rachel , this is perfect. !!

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

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/

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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

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.

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.

@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

I know that dry eyes are part of small fiber neuropathy, but a couple of weeks ago my left eye began doing odd things--blurry, vision impaired, jumping, etc.,--so I saw the ophthalmologist that has cared for my eyes for the past 15 years including two cataract surgeries. He's frequently commented that my eyes are very healthy, but this week he thinks what's going on in my left eye is connected to my neuropathy. Now the damn neuropathy has hit me from head to toe...where else is it going to get me?

steeldove, the vision issues you mentioned including neuropathy match symptoms from a possible thiamine deficiency. The lack of vitamin B1 is the cause of a long list of health issues instigated by a deficiency of sufficient magnesium needed to make thiamine bioactive. Thiamine tetrahydrofurfuryl is a thiamine form that passes through the blood/brain barrier and is worth researching. Always consult with your health care professional before using any supplement.
.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/#:~:text=Conclusion-,Visual%20loss%20due%20to%20optic%20neuropathy%20is%20a%20rare%20manifestation,of%20the%20central%20nervous%20system.
https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#TOC_TITLE_HDR_7
https://www.aaojournal.org/article/S0161-6420(00)00625-4/fulltext
https://knowledgeofhealth.com/ignored-vitamin-cure-for-macular-degeneration/
https://www.krispin.com/magnes.html
https://nootropicsexpert.com/vitamin-b1-thiamine/

Dear rwhinney, I think i had posted early in the months to you re: dry eye, cataract sx with my husbands right eye. He had a Panoptix lens put in june 29th.
after that photophobia set in weeks and weeks went by with 5 visits to the surgeon, and all they kept saying was "dry eye" put these drops in, these drops in,
it got relentless! Lotamax was prescribed for weeks on end, he quit ! cant go outside in sun, fish, surf, beach walk, waits till the sun goes down !, well we looked for 2 more opinions, found another doc who said a trick using a drop called PILOCARPINE for glaucoma, however, he does not have that. None seen
the idea was to try this drop once a day to help get fluid out of back of eye somehow to shrink the pupil, like dilation, to let less light in. He had severe photophobia. It helped a bit, but still , not much improvment. Finally went to BASCH PALMER EYE INSTITUTE, last week, that doctor was riduculous! he didnt even spend 15 minutes, to tell him nothing he hadnt already know. He couldt help him or refer him to anyone, 2 hour drive to get there in Palm Beach Gardens! so my husband no feels like there is no hope but time ! the lens is a powerful lens, which they should of tried to sell him the basic iol, but I guess
my guy wanted the best, and banked on seeing crystal clear. (That doesnt help the photo phobia). so we are back to square one. SICK OF THIS FEEL so
sorry for him, it has been 6 months now, no one has any anwsers, 5 doctors late !!