After diagnosis, do you continue to see your neurologist?

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 😭.

I had a similar experience! Dr W, who ordered the skin biopsies, didn’t talk to me for 2 weeks after someone from the office called to give me the positive results. When he called, he seemed perplexed about my concerns. The next week, I drove to the office and handed the receptionist my list of questions for Dr W. I looked like a crazy person, crying and handing them this piece of paper. A few days later, the OFFICE MANAGER - not a nurse - called me with his answers. 1. There is no cure, but you won’t die from this …etc etc..
I knew this doctor/patient relationship would never work, and I started looking for someone who I felt comfortable with for the long term. I am fortunate to live in a larger city with lots of options. I’m aware not everyone has choices.

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.

My most helpful professional is a Patho physiologist who studied in Amsterdam. He has a private practice… Not connected to a hospital or clinic. He acknowledges PN is painful and frustrating. He did a very, very thorough exam on me and felt like the PN is related to poor posture and old back injuries. He didn’t have a cure or promise any miracles, but suggested exercises and positioning which have helped. Gave me the book. “ McKenzie method.,.. treat your back”. Other professionals just wanted to use meds then just kind of shrug when those don’t work. The most information I have gotten has been from him and from you people on Connect. Thanks for everybody’s input.
Bcool123

I had the same question too so I asked my physician therapist and neurologist. They both pretty much said when you’ve got a new “something” that lasts for more than a few days and is severe enough that you cannot get it off your mind and it continues to bother you. We all know our bodies and we all have ongoing “normal” aches and pains both chronic and acute to a varying degree. I hope this helps provide some prospective?