Replies to Hi Rachel, thanks for thinking of us in regards to this. It seems clear that this…

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Eye Conditions | Last Active: Dec 23, 2023 | Replies (299)

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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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Replies to "Hi Rachel, thanks for thinking of us in regards to this. It seems clear that this..."

Rachel, Volunteer Mentor | @rwinney | Jun 27, 2020

@jesfactsmon Yes, Albany Medical College hospital in my area has one (as per the Neuro Opthamologist I will be seeing). He is a board member there and once he and I meet in July, he will assess my situation and hopefully help me get tested. Or I will find out it's of no real value. It's no surprise by now that I'm a person who likes knowing things.... every layer, every angle that may hold hope or promise.

I will say this.... I'm slowly feeling improvement in certain areas of my body. I havent wanted to say it before because it hadnt lasted but, my hands now feel almost 100% normal. They are better without repercussions! Other parts show signs of improvement yet continue to have different repercussions...pain, burning. aching, weakness and minimal but occasional odd sensations like, ripping, tearing, vibration. Ive been able to get a little more driving in but it's a catch 22. I think I've been braver to try. I have been mentally and physically pushing myself which has brought pain but satisfaction. For every pain controlled moment that allows me to experience socializing and minimal participation in activity, I feel stronger. I've come to better terms that with a day such as that, I will pay the next day but get back up swinging the day after that (you all hear me, neuropathy sufferers). Yesterday I went on a date with my husband and slowly walked about 2 blocks for lunch in a beautiful little lakeside village. Pain meds disguised and allowed and I took advantage.🤗
It wasnt pretty last night, nor today but I did it! Desire is so important, I'm finding.

I seem to be the only one (or very few) that has SFN from a vitamin deficiency so it's hard for me to connect with others experiencing my particular journey. It is my long term hope and goal that given time (as my neurologist mentioned when first diagnosed) my pain may diminish and nerves regenerate from regulating deficiency. The fact that the odd, painful, annoying sensations dont harass me like they have over the past 2 years, tells me either nerves are regenerating, my supplement protocol is helping in that area or on a slim chance, Lyrica helps (which is not my gut feeling). Maybe all the above.

Anyhow, I may be the fortunate one in the fact that I had a treatable underlying cause. Only time will tell. The past several years have been rapid shots fired and IF I've developed Pain Central Sensitization...I am working hard on my own (pre-Mayo) to recreate neurons, build new pathways and re-teach my brain to come down from the chaos. If I'm wrong, I may consider pain stimulator implants in the future but, I still find that I want to experience Cornea Confocal Microscopy to look deeper into the layers for deterioration or a regeneration path. Call me a dreamer!

I kind of hear you about Linda and the "it is what it is" theory. When someone has not walked in others shoes, they can not judge. However, I will always keep Linda in mind and remain hopeful for she as well as others. I hold out hope that a pain stimulator implant may be her answer and am glad she (you) have Mayo Connect and its wonderful people to guide you.

Hey, thanks for being my sounding board this morning! Have a wonderful day and hello to Linda.