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Hi Hank. Wanted to connect with you so I jumped back to this discussion. Has Linda had a skin punch biopsy to diagnose her SFN? Cant remember.
The reason I ask is because I discovered a while back there is another means of testing for SFN and that is via Cornea Confocal Microscopy. It's a very expensive piece of equipment, and on the newer side of testing, that not only diagnoses but, also offers the ability to examine severity of progression and possible regeneration.
Last year I was on a mission to find who had the microscope because the cornea holds the greatest # of small nerve fibers in the whole body and given my neuropathy, photophobia, and hyper sensitivity ... I thought it may be a vital test to help piece together my issues more direct and in depth. My neurologist brushed it off and said ask your eye doc. My cornea specialist said the microscope was too expensive to purchase. So, I gave up and dropped the thought. Until recently.
I will attach a link or two for your review. I thought of Linda because it mentions chemo induced neuropathy (among others) and I think offers clarity for neuropathy patients. I am scheduled 7/14 to meet with (a 2nd) Neuro Opthemologist, that I tracked down, who is willing to review my case and weigh in on whether this is a worthy cause for me. He is on the board of a local university hospital that offers Cornea Confocal Microscopy. Maybe I'm in over my head with playing Dr but it does not appear to be rocket science so its worth a shot. If I'm wrong, I'm wrong...nothing ventured, nothing gained. Just wanted to share. I will be curious on your thoughts after reading and researching.
https://www.nature.com/articles/s41598-018-23107-w
Replies to "Hi Hank. Wanted to connect with you so I jumped back to this discussion. Has Linda..."
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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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3182640/