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← Return to biopsy for small nerve fiber
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It sounds like you are very close to a diagnosis with all your positive results. At least you know that there is a reason, or reasons for your situation. It just hasn’t all been pulled together into a single diagnosis. With all of your test results, you could get a referral to the best teaching facility where all it takes is one good doctor who has seen this exact presentation and knows what it is. (I’m close to UAB, so go there). I don’t have that diagnosis, and I’m starting to accept what I’ve been told by several of my medical team group - at this point, knowing exactly what it is won’t change the treatment. I don’t like that statement, but might have to accept it. You have a recessive gene identified. That’s huge. Research more about that, and see if a group somewhere is doing more research on that. My genetic testing was normal, except for one small blip that was deemed insignificant. But the lab that did it told me to check back every few years, as new genomes are always being identified. That’s important, because my sister has the same symptoms as me.
My symptoms started 9 years ago. Get ready for a slow as molasses journey into finding your diagnosis!
Replies to "It sounds like you are very close to a diagnosis with all your positive results. At..."
Stop beating the bushes around-go straight to the horse mouth-which is a podiatrist...they do skin biopsy test to determine SFN. With the results from podiatrist ...find a clinic who's treating neuropathy using Sanexas machine-a bio generative electrical impulses.
This treatement is approved by FDA but not covered by Medicare ins.
It cured me in just two month-total 16 sessions.
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Thank you so much for replying with your positive but also realistic message. I would love to go to Mayo or University of MN. Mayo does not accept any out of network Medicare Advantage plans at least in 2023when I was looking at going there. If you are too young for Medicare, remember that about Advantage plans which are not good when a serious potentially long term illness comes about. I cannot change to a gap plan or other choices. Only choice is another Advantage plan or traditional Medicare which is then hat I am responsible for 20% of all Medicare allowable charges. We are reviewing option now for next year. Some places have a hold on accepting anymore neuro patients. At least my Advantage plan is a PPO and is a very large one.
Warmest regards to you and your sister.