Eyes and Neuropathy

Posted by rwinney @rwinney, Wed, Jun 17 7:11am

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.

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

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@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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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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@ecc79

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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@ecc79 Welcome to connect Interesting about photophobia . I have always had sensitivity to the sun and very brightly light rooms . I never had been on gabapentin till just a year ago so don't know what I can atribute it to. I did have measles and the babysitter at that time let the light into the room that's all I can think of

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@helennicola

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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Wow, at first glance this does look like a real breakthrough in the search for effective neuropathy treatments. Let;s hope the trials complete successfully and an approved drug becomes available. Very timely posting it in conjunction with the discussion of cornea confocal microscopy. I am guardedly excited. Thanks Helen!

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@jesfactsmon

Wow, at first glance this does look like a real breakthrough in the search for effective neuropathy treatments. Let;s hope the trials complete successfully and an approved drug becomes available. Very timely posting it in conjunction with the discussion of cornea confocal microscopy. I am guardedly excited. Thanks Helen!

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…although it would be nice to know what has happened with this in the last three years. Don't see much published online since May '17. Do you have anything more recent Helen?

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@helennicola

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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Hi and thanks Helen. I will write it down and ask at my 7/14 2and opinion appointment with new neurologist. Thanks!

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you’re welcome!😁

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@jesfactsmon

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

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@jesfactsmon I believe there's one in Portland Oregon

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Hi Rachel @rwinney. I have noticed my new glasses have made a significant difference in decreasing my photophobia. With the prescription eyes glasses, each eye sees the same magnification thereby decreasing the strain. I still have the double vision. With a lower sensitivity to light, I am able to open both eyes more. I use the lubricating eye drops. I am wondering what you can do to decrease your eye strain. Ask your ophthalmologist if your photophobia is related to eye strain. I still have some eye strain due to the diplopia but apparently I reduced just enough to cause the photophobia to decrease. I hope you get some relief. My mother has macular degeneration and complains of photophobia. Unfortunately all she can do is wear sunglasses outdoors for help.

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@avmcbellar

Hi Rachel @rwinney. I have noticed my new glasses have made a significant difference in decreasing my photophobia. With the prescription eyes glasses, each eye sees the same magnification thereby decreasing the strain. I still have the double vision. With a lower sensitivity to light, I am able to open both eyes more. I use the lubricating eye drops. I am wondering what you can do to decrease your eye strain. Ask your ophthalmologist if your photophobia is related to eye strain. I still have some eye strain due to the diplopia but apparently I reduced just enough to cause the photophobia to decrease. I hope you get some relief. My mother has macular degeneration and complains of photophobia. Unfortunately all she can do is wear sunglasses outdoors for help.

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Hi @avmcbellar. Great to hear! I'm happy you've notice some relief with photophobia and strain. I'm with your Mom in always needing sunglasses… and my baseball hat. Cutting down light from above helps me alot. I will see what my 2nd opinion neuro opthamologist has to offer. Take care.

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Hi, has anyone had any experience with taking omega3 supplements that contain DPA? Specifically any that comes from the AUUM company?

I happened upon some information this morning about Omega 3's in relation to SFPN. Someone on another blog mentioned this Canadian company called AUUM who makes omega3 products that apparently aid small fiber nerve growth (quantified by measuring corneal nerve fiber length (CNFL)). AUUM's website auum.ca says that one Canadian trial found that "patients on average experienced a 29% increase in corneal nerve fibre length when supplementing AUUM oil, which is considered to be representative of small nerve fibre regeneration in other parts of the body." The difference in their omega3 oil is apparently that it comes from mammals (seal oil) as opposed to fish and therefore contains more DPA (most omega3 supplements only contain EPA and DHA to any significant amount). DPA is said to be very important to nerves and most people do not get enough. This is what I have gleaned in a couple of hours of searching info on the web, but I have just scratched the surface. Looking for anyone who has knowledge or experience regarding this subject, especially if anyone has tried any AUUM's products. Thanks.

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@jesfactsmon

Hi, has anyone had any experience with taking omega3 supplements that contain DPA? Specifically any that comes from the AUUM company?

I happened upon some information this morning about Omega 3's in relation to SFPN. Someone on another blog mentioned this Canadian company called AUUM who makes omega3 products that apparently aid small fiber nerve growth (quantified by measuring corneal nerve fiber length (CNFL)). AUUM's website auum.ca says that one Canadian trial found that "patients on average experienced a 29% increase in corneal nerve fibre length when supplementing AUUM oil, which is considered to be representative of small nerve fibre regeneration in other parts of the body." The difference in their omega3 oil is apparently that it comes from mammals (seal oil) as opposed to fish and therefore contains more DPA (most omega3 supplements only contain EPA and DHA to any significant amount). DPA is said to be very important to nerves and most people do not get enough. This is what I have gleaned in a couple of hours of searching info on the web, but I have just scratched the surface. Looking for anyone who has knowledge or experience regarding this subject, especially if anyone has tried any AUUM's products. Thanks.

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@jesfactmon, I've taken the Omega-3 supplements as part of my protocol of supplements for the last 4 years. The original one we used was Nordic Naturals fish oil in liquid form but they now have capsules. Our new 525 protocol contains the equivalent EPA/DHA content. We also take 1-1/2 oz of Manitoba Harvest Hemp Seed Oil as the plant based Omega-3 as part of the original and the new 525 protocol.

Here's the link to the Nordic Naturals Omega-3 product on Amazon – https://www.amazon.com/gp/product/B002CQU550/

More info on my supplements are in the discussion – Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Capture

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