← Return to Neuropathy after TKR: I'm 68 and fearful of future

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Neuropathy after TKR: I'm 68 and fearful of future

Neuropathy | Last Active: Oct 22, 2023 | Replies (112)

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@rwinney

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:
https://www.amazon.com/Small-Nerves-Big-Problems-Comprehensive/dp/B07K6Z1YCN/ref=sr_1_1?crid=2FFDZ6WE8K9VV&keywords=small+fiber+neuropathy+book&qid=1654960941&sprefix=small+fiber+neuropathy+book%2Caps%2C996&sr=8-1
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.

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Replies to "Hello @lubelle - You're welcome! Being your son is in the early stages of his neuropathy..."

You have already been so incredibly helpful and I so appreciate your encouragement. I am going to purchase the book and continue to learn more. I will most definitely continue to update on his progress. I am still naïve but continue to hope to find "something" that will provide true relief. He will be visiting in August for 3 weeks and I hope to be more educated by then on SFN. Are you involved in any new treatments at all? I read about VM202 - a gene therapy that is proving to be positive for regenerating nerves. Thank you again for your encouragement and being a volunteer. I feel very powerless as his advocate, but with all of this information, I hope to regain some sense of some control for us both. Sincerely thank you!