@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.
Be well,
Rachel
You be well also Rachel. I am really happy about this new information that you might be improving somewhat. Boy wouldn't that be something? I went for a walk after my last post to you and it occurred to me that gaining any new knowledge can sometimes lead to a surprising result. I have long thought and occasionally have told others that I believe that energy is never wasted. If you put in the effort the thing that you seek might not come from the place you are expecting it from but it may come from somewhere else entirely. I am glad things seem to be looking up for you, it's apparent you HAVE put in the effort in spades! I am hoping Linda wants to do this CCM exam and will see if I can find out if there is one of those microscopes in our area. All my best to you, Hank