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Eyes and Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Jun 17, 2020

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.

Interested in more discussions like this? Go to the Eye Conditions Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 27, 2020
In reply to @johnbishop "Hi Rachel @rwinney, I had not heard the term before but think it is a great..." + (show)
@johnbishop

Hi Rachel @rwinney, I had not heard the term before but think it is a great idea to start a new discussion. Here's some information I found when trying to learn what it is.

Corneal confocal microscopy detects small nerve fibre damage in patients with painful diabetic neuropathy:
-- https://www.nature.com/articles/s41598-020-60422-7

Corneal nerve fiber size adds utility to the diagnosis and assessment of therapeutic response in patients with small fiber neuropathy:
-- https://www.nature.com/articles/s41598-018-23107-w/

Establishing the Diagnosis of Small Fiber Neuropathy – Corneal Confocal Microscopy is Superior to Skin Punch Biopsy
-- https://www.pathlms.com/iasp/courses/11312

Hope this helps!

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@johnbishop Yes, it sure does. Thank you. I posted one of the same links and a government link which is alot (too much) information. I will start a thread and go fishing. I feel CCM is mainly unknown and hard to come by due to its cost but its good to spread awareness. Thanks John.

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1 reply
Hank | @jesfactsmon | Jun 27, 2020
In reply to @rwinney "@johnbishop Yes, it sure does. Thank you. I posted one of the same links and a..." + (show)
@rwinney

@johnbishop Yes, it sure does. Thank you. I posted one of the same links and a government link which is alot (too much) information. I will start a thread and go fishing. I feel CCM is mainly unknown and hard to come by due to its cost but its good to spread awareness. Thanks John.

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Rachel, I found several confocal microscopes. I also saw one for sale in 2004 for $247,000. Probably double that now (but might qualify for Amazon Prime 😉) Here's some I found online. The one at SUNY might be close to you.

U of Mississippi
Cincinnati Children's Hospital
Beth Israel Med Center Boston
Upstate Medical U.
SUNY Upstate Med U.
Roger Williams Med Center
Brigham and Women's Hospital - Boston
U of Maryland Med School

Still looking for one near Nashville.

Also, here is a link to some details about confocal microscopy:
https://www.olympus-lifescience.com/en/microscope-resource/primer/techniques/confocal/confocalintro/

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1 reply
Hank | @jesfactsmon | Jun 27, 2020
In reply to @jesfactsmon "Rachel, I found several confocal microscopes. I also saw one for sale in 2004 for $247,000...." + (show)
@jesfactsmon

Rachel, I found several confocal microscopes. I also saw one for sale in 2004 for $247,000. Probably double that now (but might qualify for Amazon Prime 😉) Here's some I found online. The one at SUNY might be close to you.

U of Mississippi
Cincinnati Children's Hospital
Beth Israel Med Center Boston
Upstate Medical U.
SUNY Upstate Med U.
Roger Williams Med Center
Brigham and Women's Hospital - Boston
U of Maryland Med School

Still looking for one near Nashville.

Also, here is a link to some details about confocal microscopy:
https://www.olympus-lifescience.com/en/microscope-resource/primer/techniques/confocal/confocalintro/

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A few more, some in NY:

U of Nebraska Med Center
U of Kansas Med Center
UT Southwestern Medical Center - Dallas
Icahn Scool of Medicine Mt Sinai
New York Presb. Hosp - Columbia U Med Center
New York Blood Center (nybc.org)

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 27, 2020
In reply to @jesfactsmon "A few more, some in NY: U of Nebraska Med Center U of Kansas Med Center..." + (show)
@jesfactsmon

A few more, some in NY:

U of Nebraska Med Center
U of Kansas Med Center
UT Southwestern Medical Center - Dallas
Icahn Scool of Medicine Mt Sinai
New York Presb. Hosp - Columbia U Med Center
New York Blood Center (nybc.org)

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Great researching Hank! Thanks so much. Yeah - NOT buying one. 😅

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 27, 2020
In reply to @rwinney "Great researching Hank! Thanks so much. Yeah - NOT buying one. 😅" + (show)
@rwinney

Great researching Hank! Thanks so much. Yeah - NOT buying one. 😅

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Also, Hank I started a new thread on CCM. Chances are not many have heard about it nor are many going to ever use it or be approved through insurance.

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1 reply
Hank | @jesfactsmon | Jun 27, 2020
In reply to @rwinney "Also, Hank I started a new thread on CCM. Chances are not many have heard about..." + (show)
@rwinney

Also, Hank I started a new thread on CCM. Chances are not many have heard about it nor are many going to ever use it or be approved through insurance.

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Okay. BTW that list was just fyi, I know you mentioned the one in Albany and that it is close to you. But in case that one doesn't pan out. Still do not see one here, just that one in Miss.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 27, 2020
In reply to @jesfactsmon "Okay. BTW that list was just fyi, I know you mentioned the one in Albany and..." + (show)
@jesfactsmon

Okay. BTW that list was just fyi, I know you mentioned the one in Albany and that it is close to you. But in case that one doesn't pan out. Still do not see one here, just that one in Miss.

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Thank you Hank! Hmmm...interesting. Must be cost dictates.

I will post an update after my meeting with Neuro Opthamologist and get more of a scoop on things and whether the microscope at Albany Med is accessible. I think it's a phenomenal machine and may bring real benefit in the future...even if not to me but to others. Alot is mentioned on diabetic neuropathy.

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1 reply
Hank | @jesfactsmon | Jun 27, 2020

@rwinney Hi Rachel, I just sent you a private message. Hank

REPLY
helennicola | @helennicola | Jun 27, 2020
In reply to @rwinney "Thank you Hank! Hmmm...interesting. Must be cost dictates. I will post an update after my meeting..." + (show)
@rwinney

Thank you Hank! Hmmm...interesting. Must be cost dictates.

I will post an update after my meeting with Neuro Opthamologist and get more of a scoop on things and whether the microscope at Albany Med is accessible. I think it's a phenomenal machine and may bring real benefit in the future...even if not to me but to others. Alot is mentioned on diabetic neuropathy.

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Rachel, John, etc. re: CCM - I read of Araim Pharma completing phase II of their clinical trials for their drug cibinetide which looks very promising for actually reversing neuropathy and regenerating nerves in conjunction with selective stem dell therapy. If you google cibinetide you will find lots of info. The use of CCM as a non-invasive form of SFN diagnosis is a welcome tool. My neurologist is affiliated with a large university hospital, I just wonder how selective the screening is. It would be good to know if my SFN has improved, worsened or if it remains the same. Rachel, I wonder if you would be a candidate for a clinical trial with this drug? Helen

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2 replies
ecc79 | @ecc79 | Jun 27, 2020

Interesting. My eyes were light sensitive but I do not have a problem with dry eyes. I attributed the light sensitivity to the Gabapentin I was taking. I do not take GABA and no longer have a problem with light sensitivity.

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