Hello @lubelle - You're welcome! Being your son is in the early stages of his neuropathy diagnosis, I completely understand how some of the info I provided could be scary. I'm sorry for that, and in no way meant to alarm you. Not having a known cause is frustrating, when it comes to treatment. In some cases, nerves have the ability to regenerate over time, that would be a hope.

The info I provided you earlier can be tools to keep in your back pocket. I like to inform folks not to scare them, but to educate because I wish someone had offered me more. That's why I came back to Connect after my rehabilitation program, to help. I get a little overzealous sometimes out of passion.

I am managing fine now, thank you for asking. I've come to accept my chronic condition and have learned to manage using the many life-changing tools taught at Mayo's PRC. There are no longer "treatments" as I have been there, done that and say good riddance to what never worked.

It's a journey, and my best advice to your son is to stay informed about his health and condition, learn as much as possible, and be his best advocate. Remaining calm and taking care of emotional and behavior needs is important as he navigates the future. There are many good telehealth services for this. Also, proper nutrition and exercise is vital.

A while back I found this helpful book about SFN. It was collaborated on with my personal neurologist from NY, Mayo doctors and others. It's pretty cheap on Amazon. Here's a link:

And here is a discussion about the book and other helpful resources:

- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-book/

Connect is here to help, support and provide encouragement during challenges for all along the way. Do you mind keeping us updated on your son's progress?

Wishing you all the best.

Jump to this post