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After diagnosis, do you continue to see your neurologist?
Neuropathy | Last Active: Jul 29, 2023 | Replies (15)Comment receiving replies
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.
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My neurologist was more accessible pre diagnosis. Once she confirmed I had SFN via biopsy, I think interest was diminished. Although a specialist in SFN, she does she the full spectrum of neuromuscular disorders. And she basically told me I’m lucky compared to other disorders. So IDK 🤷♀️. I don’t think that she or my PCP has a whole lot of interest as to how this will affect the rest of my life 😭.