After diagnosis, do you continue to see your neurologist?

@robindancer5678, Your question is a good one that I suspect a lot of folks diagnosed with neuropathy have thought about if not asked the question directly. I was diagnosed with idiopathic small fiber peripheral neuropathy in 2016 by a Mayo neurologist after not bothering to seek a diagnosis for over 20 years of symptom progression in my toes and feet. I only have numbness and was told all along there was no medications that would help and my Mayo neurologist confirmed that when I was diagnosed. That started my journey on learning as much as I could about my diagnosis and treatment options available that might help which was when I first found Mayo Clinic Connect. Haven't seen a neurologist since I was diagnosed. I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Two great sites for learning more about neuropathy that have been helpful for me:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Are you looking for information on possible causes for your small fiber polyneuropathy?

Omgggg you are so right it takes forever to get an appointment with a neurologist! Did your neurologist give you instructions for follow up?

I didn’t follow up with the person who diagnosed me because I felt she was very unprofessional (that’s another story for another thread…), and while I wanted to talk to someone else, it didn’t feel worth the stress since I wasn’t interested in any of the treatment options they presented and I had no reason to think a third opinion would offer other alternatives.

I get really stressed with medical appointments and getting my hopes up and then crushed, and I have chronic pain, so at some point sometimes I must decide that even if someone recommends something, it may not make sense to follow through with the referral, and that’s okay. I’ve made exceptions if I think I can gain helpful insight, i.e. when I got an appointment at Mayo, when I met a neurologist by accident who had experience with my conditions (POTS, SFN, dysautonomia), and later when the NP I’ve been seeing insisted I see a physician to be proper about it and recommended someone. (She felt uncomfortable that I was only seeing her and didn’t have an attending neurologist after my previous two left the clinic).

To backtrack, I happened upon a better fit for me neurologist, and she instructed me to follow up with her PA. In their clinic, you may see the neurologist once a year (if that); otherwise you see the PA or NP. Then the neurologist I really liked left… And they didn’t have someone who had her same expertise so they stuck me with someone random.

I didn’t see a need to follow with her because I’m not on medication so didn’t need refills of monitoring (and if I did it was easier and more valuable to me to see the NP, because she’d actually talk to me for 30 minute and brainstorm ideas for pain management, or offer encouragement), she didn’t feel comfortable implementing the IVIG plan my previous neurologist recommended, and honestly I just didn’t feel like she had anything to offer me.

So I figured, why go, if it’s so stressful, it costs time and money, and I’m not gaining anything that’s changing my course of treatment?

I suppose it depends on what your neurologist recommended, your preference, and if you need regular monitoring for any treatment they’re prescribing, unless you have a significant change in symptoms.

With the neurologist I liked, I always scheduled an appointment anyway since it took 9-12 months to get one. Otherwise I just planned to see the PA/NP, but that’s because I had that option and those appointments were more helpful.

I feel like that may have been confusing, but just wanted to share how I approached it.

That makes perfect sense. Thanks for your feedback.

Hi again John. I would like to think there’s an identifiable cause for this peripheral neuropathy so that I can address it, but I’m starting to think that it’s idiopathic and it’ll be a question of just managing it. Which is why I’m wondering if I would be seeing the neurologist again, or if I should try and find a different kind of specialist to approach managing it from a holistic perspective.

@robindancer5678 - My primary care doc wants me to see a neurologist at least once a year and I agreed to do so My PCP knows little about PN. If I feel the need to obtain an in-depth evaluation relating to the PN, I will then make an appointment at a teaching hospital. I go to my dentist twice a year but if I need a root canal, I go to a specialist. Same applies to PN. After all the tests I've had, I do feel it is necessary to maintain a relationship with a neurologist but not just any neurologist, one that specializes in PN and you feel comfortable with that doctor.

Keep seeing your neurologist! Maintain communication, because this disease may continue to change on you, and you will need the neurologist’s expertise. Also they keep up with the latest research and development. My neurologist works with me on medication dose changes, prescribes a compounded pain cream, and documents changes in my condition. He is also my resource for neurological testing and interpretation as needed. If you have a neurological condition, you will always need the care of a neurologist. They will help you decide on the frequency and type of follow-up you need from them. And if you have changes, it’s easy to get an appointment as needed.

Once a year here too
Only. If a problem arise.

I am in San Diego, CA and am in the process of waiting 6 mos. for an appt. Thank goodness for neurologists working in hospital only. Recently my hospital neurologists told me it was 600:1. Good luck to you. I hope you get an appt. with a good one.

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.

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.