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After diagnosis, do you continue to see your neurologist?
Neuropathy | Last Active: Jul 29, 2023 | Replies (15)Comment receiving replies
I do agree with you on this. But I think it is an excellent question to raise. I see my neurologist twice a year. She is a well known researcher and clinician in SFN. She is easy to talk to and monitors me mainly for changes and progression (usually I know way before her what has changed). But the medication, Low Dose Naltrexone, that I was most interested in, she wasn’t willing to prescribe. And there is no discussion about how to live with this or even how it affects my overall health and quality of life. Would love to have a NP or other support person to brainstorm ideas with.
She is always going to know the latest developments in the field, so I will stay under her care. But sometimes I wonder why.
Replies to "I do agree with you on this. But I think it is an excellent question to..."
Sometimes I wonder why too. It’s difficult because you may have new (or unrelated) symptoms develop that you’re unsure how to treat, and talk to your PCP or GI or Cardiologist thinking it falls under their realm, but they say it’s “probably” your PN so you should see your Neurologist. So you’re thankful you have the standing Neurologist appointment, even though they may likely say they don’t think it’s your Neuropathy, see your GI again. A bit of a vicious cycle feeling like a ping pong ball, but once in awhile it might fall in the right court and there might be a remedy.
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Yes, I agree that a knowledgeable NP is invaluable. I left my previous neurologist because he didn't have a nurse or NP to call on. He was the only source of information, and was very difficult to talk to. Now I'm in the same situation again - my current neurologist is a new doctor, and apparently doesn't get to use the NP in the office! Fortunately he is not overbooked yet, so I've been able to see him when I need to, and we communicate a lot by messages via the patient portal. He has even messaged me on the weekend, and on July 4th! I can't complain.