Does anyone have eye problems because of neuropathy?

Posted by terid @terid, Oct 5, 2023

I recently was told I have polyneuropathy and because I have tingling on the left side of my face my neurologist gave me a referral to a neuro-ophthalmologist. Has anyone gone through this. I also have a tiny Meningioma and I think that is why the referral. Can anyone help!

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@johnbishop

Hi @SusanEllen66, Sorry to hear your vision is getting worse. What you describe sounds a lot like Giant Cell Arteritis.
"GCA can affect your eyesight, causing sudden vision loss or double vision. Blindness caused by GCA generally happens first in one eye, but can also happen in the other eye if the condition is not treated. That is why it is extremely important to be checked by an ophthalmologist right away if you have these symptoms."
--- What Is Giant Cell Arteritis?: https://www.aao.org/eye-health/diseases/what-is-giant-cell-arteritis

Have you ever been tested to see if you have Giant Cell Arteritis?

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@johnbishop I had a biopsy of my temporal artery last year. It was negative. So, I don’t have GCA.

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@westcom

I was just diagnosed with GCA and taking a high dose of prednisone. I don’t know your age but it primarily affects older Caucasian women. I had sudden loss of vision in one eye as the only symptom plus some jaw issues. It was diagnosed through multiple blood tests, MRI, and artery biopsies. It is serious and you need to be seen by an ophthalmologist immediately to at least rule out this autoimmune disease. Be aggressive about getting an appointment; have the referral resent; and keep calling. In today’s world of medicine you have to be your own best advocate.

Anyone else have experiences with treatment of GCA? Vision loss that returned?t

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@westcom I had a biopsy of my temporal artery last year. It was negative. I was then diagnosed with occipital neuralgia.

Before they did the biopsy, I had all the symptoms of GCA. Vision loss, scalp pain etc.

With O. N. it’s a matter of doing some stretching exercises to help with the neck and skull.

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@SusanEllen66

@westcom I had a biopsy of my temporal artery last year. It was negative. I was then diagnosed with occipital neuralgia.

Before they did the biopsy, I had all the symptoms of GCA. Vision loss, scalp pain etc.

With O. N. it’s a matter of doing some stretching exercises to help with the neck and skull.

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Susan: Thanks for the reply. My only symptom was sudden vision loss in one eye I was surprised at the diagnosis because I had no other markers. Did your vision return? Did they treat you with steroids? Good luck and hopefully you’ve had a full recovery.

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@westcom

Susan: Thanks for the reply. My only symptom was sudden vision loss in one eye I was surprised at the diagnosis because I had no other markers. Did your vision return? Did they treat you with steroids? Good luck and hopefully you’ve had a full recovery.

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@westcom the vision in my left eye was only gone for about 30 minutes. But it happened 3 times in two days. It was weird. I could see white light, almost like looking through a fluorescent light bulb.
The eye surgeon said that was a good sign because it shows the eye was still working.

I got the biopsy done on my artery soon afterwards. So no, they didn’t put me on prednisone.
All I did was go to PT to stretch my neck.

I hope you are doing well. GCA is a form of Vasculitis as you probably know. Prednisone is the “evil medicine” that keeps things at bay.
I too have Vasculitis, but it’s Polyarteritis Nodosa which is very rare. I am in remission now so I don’t think about that much.

Wishing you the best my fellow Vasculitis Friend

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@SusanEllen66

@johnbishop hi John, I have had temporary loss of sight in one eye because the nerves underneath my scalp are inflamed. It is not from Polyneuropathy.
I have Occipital Neuralgia which is due to my head and neck being misaligned.

I do have double vision and it’s getting worse. I don’t know what the cause of that is. My ophthalmologist just said my sight is getting worse. He said no glasses because, according to him since I had multi-focal lenses implanted during cataract surgery, in both eyes I can not wear prescription glasses.
I didn’t know that was a possible problem.

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I started seeing flashes of white light just in the far outer edge of my left eye. It comes and goes but is frequent. My neurologist referred me to an optometrist who specializes in ocular surface disease, dry eyes and glaucoma. I've seen her twice and she has done tests and assured me that my retina is intact but there are some issues with my eyes. She asked me if I wanted glasses and I said I have not needed them since my cataract surgery some years ago when artificial lens were implanted. When I read your question I wondered about why I could get glasses but you can't. I don't think my lens are "multi-focall" so maybe that is the difference. Now I am wondering why I was referred to and optometrist instead of an ophthalmologist (although she does research and works for the Wilmer Eye Institute which is associated with Johns Hopkins.

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@fue

An optical CT. Or an optical coherence tomography. It is done at the Opticians and takes images of inside or behind your eyes. I think it cost about £13. It's very useful for comparison.

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I was told on the 28th of October I have Idiopathic Macular Tetangiectatic. ( Mactel 2) Easy way to look up. My Retinal doctor says it's 1 in maybe 10 a year that he sees. No cure, but I'll lose my eyesight as I know it. Right now it's just the left eye, I forgot to ask if it could be one of the issues with P.Neuropathy. But it does have issues with small unusual arteries. He put IV dye to see the eyes better. Too much to take in. I was going to discuss cataract removal , since eyesight had changed just since last year.
Probably not related, just one more thing to deal with. Ok.

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@catharbert

I started seeing flashes of white light just in the far outer edge of my left eye. It comes and goes but is frequent. My neurologist referred me to an optometrist who specializes in ocular surface disease, dry eyes and glaucoma. I've seen her twice and she has done tests and assured me that my retina is intact but there are some issues with my eyes. She asked me if I wanted glasses and I said I have not needed them since my cataract surgery some years ago when artificial lens were implanted. When I read your question I wondered about why I could get glasses but you can't. I don't think my lens are "multi-focall" so maybe that is the difference. Now I am wondering why I was referred to and optometrist instead of an ophthalmologist (although she does research and works for the Wilmer Eye Institute which is associated with Johns Hopkins.

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@catharbert
The multi-focal lenses I have are the equivalent to wearing progressive lenses in glasses.
I paid an extra $2500. each eye for them.
I didn’t know that they would prevent me from getting glasses in the future…

If I were you, I would go to a cornea specialist (ophthalmologist). An optometrist cannot always do what you need.

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@catharbert

I started seeing flashes of white light just in the far outer edge of my left eye. It comes and goes but is frequent. My neurologist referred me to an optometrist who specializes in ocular surface disease, dry eyes and glaucoma. I've seen her twice and she has done tests and assured me that my retina is intact but there are some issues with my eyes. She asked me if I wanted glasses and I said I have not needed them since my cataract surgery some years ago when artificial lens were implanted. When I read your question I wondered about why I could get glasses but you can't. I don't think my lens are "multi-focall" so maybe that is the difference. Now I am wondering why I was referred to and optometrist instead of an ophthalmologist (although she does research and works for the Wilmer Eye Institute which is associated with Johns Hopkins.

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I too see flashes of light out of the corner of my eye, but my Ophthalmologist said it should go away. However, from time to time I still see them, but not as much.

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From what I have read this flashing light can have a variety of causes, some serious and some not serious. An ophthalmologist (or in some instances an optometrist) can perform tests to examine the eye to determine the cause or at minimum to determine if there is any damage especially to the retina which can become detached. My retina is still attached and it seems safe to just monitor it every 4 to 6 months.
I would not have chosen to go to an optometrist for this problem but I was referred to one who is associated with the Wilmer Eye Institute at Johns Hopkins. I think that my neurologist chose her because of her research activities and probably she is capable of determining if anything is concerning enough to send me to an ophthalmologist. It seems that qualified doctors are in such short supply compared to the demand that the medical profession is finding ways to most efficiently provide care to the most patients. I am finding it more difficult to find specialists in the Baltimore area than it was in the Houston area and getting to see them takes several months.

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You may want to look into whether you have a mitochondrial respiratory chain gene mutation. These can cause LHON, or Leber's Hereditary Optical Neuropathy, which can result in blindness. There is a treatment/cure for it which involves injection of an inactivated viral vector containing a corrected copy of the gene into your eye. The corrected gene copy is absorbed into your retina cells and improves your vision. This has been verified in clinical trials. The same mutant gene may also be the cause of your meningioma.

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