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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)

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@johnbishop

Welcome @jessz, Thanks for sharing your story. It can be frustrating to say the least when you are struggling to get a diagnosis. Neuropathy can have so many causes and . I'm happy to see that you can relate to @kyc117 and the story she shared. Hopefully your doctors can rule out neuropathy and figure out a treatment plan that helps.

It sounds like you have been doing your research. It is always helpful to learn more about your condition, if for nothing else it can help ask better questions of your doctors. Here are a few sites you might find helpful:

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You mentioned you have an appointment in October with a new neurologist. There is another good site that has some tips on planning your conversation with a doctor - The Patient Revolution: https://patientrevolution.org/visit-tools.

Do you normally take a list of questions along with you to doctor's appointments?

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Replies to "Welcome @jessz, Thanks for sharing your story. It can be frustrating to say the least when..."

I don’t normally take a list. Also the new neurologist was referred by my current neurologist just for the biopsy. I think that office doesn’t want to just see me for the biopsy though. There have been other patients at my current office that have been waiting almost a year to get their biopsy! I think it’s totally unacceptable, especially since it’s the Phoenix area and not some little rural town. I’m trying to be patient with the medical system but waiting months for testing is hard. Thanks for your reply and I will check your links.