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?

I think my neurologist was hesitant about going out on a limb with a diagnosis for quite some time. Its hard enough getting the right tests and explanations of what the results mean. Initially I was diagnosed with peripheral small-fiber neuropathy- but they never bothered to do the punch biopsies. So, I decided to switch hospitals & doctors. Now years later, after several rounds of EMG tests and blood tests, the diagnosis has changed to axonal polyneuropathy (sort of?). Hard to get that in writing though. Henceforth, I am hesitant to continue seeing any doctors because I am greatly dissatisfied with the medical system in my area. If things get noticeably worse I may try my luck again with another neurologist.

Why would you quit? This progresses and moves into other parts of your body. I am between stage 4 and 5.
Stage 5 paralysis and confined to wheelchair. Falling, losing balance and dizziness fractured my ankle in two places. Have to wait for it to quit bleeding to remove the broken bone. I chipped the bone avulsion fracture medial, lateral malleous. I fell three times in two days no longer feel legs. What are you going to do when yours starts progressing? Who’s going to monitor you? The neurologist is supposed to use a tuning fork and use a paper clip or needle on your legs to check for loss of feeling.
It has moved into my heart cardiac autonomic neuropathy aka CAN. Then you have arrhythmia's and uncontrollable blood pressure. You will have problems regulating body temperature part of neuropathy. There is more than just a diagnosis and walking away. You do not say if yours is diabetic, autoimmune, idiopathic, caused by medication. What is the cause of your ? I have autoimmune neuropathy.

You're thinking much as I did, @robindancer5678, about a year after I'd gotten my diagnosis. Mine is chronic idiopathic axonal polyneuropathy (or CIAP, if you're pressed from time). I, too, chewed on that word "idiopathic," balking at the idea of "unknown" and wondering if a different kind of doctor might be of help. In the end, I chose another neurologist, but one whose shingle also read "Physiatrist." I was hoping a more holistic approach might be helpful.

Well, it was, and it wasn't. Today, I tell people I have one and one-half neurologists. The "one" is my original neurologist; these days, we still do follow-ups, but mostly for chit-chat. (It gives me some comfort just to know we're still connected.)

The "one-half" is the physiatrist. I no longer see him, but we keep in touch by phone. (Only recently, he made a minor adjustment in my medication.

So, to answer your question: Is it worth doing follow-ups? My answer would have to be Yes, and No. I suppose you might say I do "low-intensity" follow-ups, if for no other reason to know I've two doctors I could call if my one symptom (bad balance) should suddenly worsen.

My very best to you!
Ray (@ray666)

I have seen 2 neurologists for my autoimmune neuropathy. Both my feet are numb and my left leg feels like it is asleep. Both Neurologists basically said "it is not that bad" LOL! And my GP does not deal with my neuropathy since I have a neurologist. It seems that nowadays, GP's disown any part of your body that is treated by a specialist. I am a nurse and I miss the days of medicine when a GP or internist doctor actually cared and treated you as a whole person.

Welcome @loripepper, I'm not sure that they don't care about a neuropathy diagnosis. I think it's more that there really is no cure and when you only have numbness (me too!), there's no medication that will help (as far as my non medical background knows) and it's up to each of us to learn as much as we can about our condition and treatments that are available that may help. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I miss those days of medicine myself as I'm old enough to remember having a family doctor that made house calls 🙃. I am hopeful though and a great believer of the work being done to change the doctor/patient relationship - https://www.patientrevolution.org/

There are quite a few discussions and comments on "neuropathy numbness only" if you want to scan through them to learn what others have shared - https://connect.mayoclinic.org/search/?search=neuropathy+numbness+only