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hypotemusea (@hypotemusea)

Small Fiber Neuropathy and genetic testing?

Neuropathy | Last Active: Oct 16, 2020 | Replies (28)

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@jesfactsmon

@hypotemusea
Welcome to Mayo Connect. I am so sorry to hear that you are experiencing such bad health issues at such a young age. That is simply not right! One question about medications. Did the doctor run you through a course of neurontin (gabapentin) before moving to Lyrica? That is the standard way it's done. It sounds like that was not the case for you. Gabapentin, Lyrica, Cymbalta, then duloxetine and amitriptyline, Tramadol, and others are usually tried first, and if none of them seem to work they might step you up to opioids and benzos, at least eventually. I would keep that attitude of yours to be reticent to take all medication such as these, and if/when you do, stay on them only if they truly benefit you, don't stay with them one minute longer (i.e. taper back off under doctor supervision). Know that medical marijuana and kratom are good for pain also.

I have heard of a few people here who underwent genetic testing for neuropathy. Wish I could remember who, it's been a few months. Have you exhausted the internet searching for info? You might want to use the search feature here on Connect (magnifying glass at top of this page) and see what you can come up with. Do you think you may have inherited neuropathy? Do other family members have it? Hope your geneticist appt. provides you useful info.

If I can figure out who it was I heard had gone for that type of testing I will let you know. Want you to know that this forum is FILLED with compassionate and smart people (as well as people like me – just kidding). I am pretty sure @johnbishop will touch base with you with something helpful, he always does. Some other good contacts and resources for good feedback here are @jenniferhunter @artscaping @lorirenee1 @jeffrapp @avmcbellar @rwinney (currently doing a 3 wk Mayo Pain clinic) and a ton of others. The site is well supervised as well by some great moderators.

Keep in touch. Good luck. More later. Best, Hank

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Replies to "@hypotemusea Welcome to Mayo Connect. I am so sorry to hear that you are experiencing such..."

Hi again @hypotemusea I did find that person. It was @mjpm2406 and you can find what they posted on their profile page describing some things about the genetic testing they had done, linked here:
https://connect.mayoclinic.org/member/180562aa00519da84045fb752d7c78c086a35d706c/
Not sure if that person is still paying attention to Mayo Connect at this point. But you can try to use their Mayo name @mjpm2406 in a post and perhaps he/she might contact you or at least post a reply. -Hank