role of ongoing medical testing for idiopathic peripheral neuropathy

Hello @badgerguy, Welcome to Connect. I think many folks like yourself including me have asked those same questions and probably have a variety of different opinions for each question. I have idiopathic small fiber peripheral neuropathy diagnosed at Mayo Clinic Rochester in 2016 but have had the condition starting sometime in my mid 40s. Didn't bother getting a diagnosis early in my life because the doctors all told me the same thing - there are no medications or treatments that will help with the numbness so I kept pushing off an appointment with a neurologist and the testing until I just wanted to know. After the diagnosis, I started looking for answers myself and learning as much as I can about neuropathy and possible treatments that might help. That is what brought me to Mayo Clinic Connect. Here's the start of my neuropathy journey posted in another discussion - https://connect.mayoclinic.org/comment/310341/.

Here are my thoughts and non medical opinions on your questions - "Is there their value in regular appointments with a neurologist if one has IPN? If yes, what purpose do they serve? What is an appropriate frequency? What types of ongoing testing is appropriate (EMGs, other)?"

Not sure about regular neurologist appointments unless one has continually worsening symptoms not just the somewhat normal progression. The value of regular testing may show the degree of progression of the neuropathy (nerve conduction studies, etc.) but for me not worth the trouble as it changes nothing in my treatment for the symptoms I have - numbness and some tingling in the feet and legs. I do think focusing on living well with your condition, exercising regularly and eating healthier play a big role in this condition so I try to work on that daily.

Sorry to hear your neurologist didn't seem to take your questions seriously. Have you done any research on neuropathy?

@badgerguy The only way issues ever become resolved is by asking questions. These doctors who are so dismissive of anyone who has questions really make me angry. I had so many ortho docs who dismissed my lower back pain because my MRIs did not reveal anything conclusive. Injections and nerve ablations did not help, etc. I finally found a private practice neurologist who spent more than an hour with me. She finally prescribed a cocktail of meds that dropped my pain down to about a 2-3. Good thing I didn't listen to the three ortho docs who told me there was nothing else that could be done. Keep searching, my friend!

It took 4 neurologists and almost 10 years of time before I got my diagnosis of idiopathic poly neuropathy in my feet. The last specialist that I saw did every test that's available including EMG and conductivity testing, blood tests, and skin puncture biopsies, only to have everything come back "normal". The last 2 times that I saw him were a year apart, and I got the general impression that I was wasting his, as well as my time. He basically told me there wasn't anything else that he could do for me, and then he retired. No referral, nothing, so I understand how you feel.

I suppose it's good to be established with a Neurologist to do the appropriate testing and then see you in follow up to make sure that there is no further progression. My Neurologist doesn't even put much faith in the skin biopsy to confirm small fiber, so I've only had the EMG and conductivity study which have come back normal on two occasions. My Physician Assistant referred me just in case anything new comes down the pike by way of treatment. You never know.
I'm fortunate that I'm not in pain or disabled in any way so far. I just have the feeling that I'm wearing knee high boots that are too tight and my socks are wadded up in my shoes and/or I'm walking on pebbles or grit.

If one is diagnosed, I don’t understand the purpose of ongoing tests. There really isn’t any cure or even treatment, that I am aware of, except for pain management with meds. If condition is caused by vitamin deficiency, a Primary should be able to monitor that. Or, if it’s caused by spine issue, that would be different.

I’d be interested in trials, if any are out there. But, my symptoms are so mild, I doubt I would qualify.

@badgerguy - Wow...what a topic and I'm sure you've raised some eyebrows today! I have idiopathic axonal sensory motor PN, diagnosed in 2015 with some minor symptoms prior to 11 years ago. In 2020 flew to Mayo in MN prior to covid and they did every test possible. I was anxious to rule out other serious potential issues. I will have this lousy PN for forever. Getting through that was difficult enough. After all, I went there to find out the cause and a "fix". They did not suggest any future testing and frankly, I didn't ask. And, as far as I'm concerned, I went to the best place available. They suggested physical therapy would help. So, is ongoing medical testing necessary? In my case, in my opinion, no. However, for some, the jury is out. Ed

@njed ~ Around 2010, perhaps earlier, I started noticing the feeling that my sock was wadded up under my left big toe joint. I started getting electrical-type sensations in my toes, and burning in the ball of my foot. My primary and podiatrist both termed it "metatarsalgia" and recommended nothing other than orthotics. It kept getting worse, progressing to my right foot. In 2017, I asked for a referral to a neurologist who had an MRI done which showed a mild disc bulge and possible pinched nerve somewhere around L4. He said it could be the cause of my "neuropathy", but because I had no back pain, he said there was no treatment for it.
We moved out of state in 2020, and my new primary referred me to a neurologist who also acted like I was wasting his time. He said I needed to be on Gabapentin and that he didn't need to see me further. I tried it at a low dose for a month and said "no thanks." My primary asked me to try Lyrica, and I thought I'd hit the jackpot! It worked for about 3 years and then I needed a bigger dose. I'm currently at 75mg 3 times a day - and I'm having incredible burning, stabbing, electric shocks, and numbness. I've read a lot of posts in the neuropathy group of people taking low dose Naltrexone (between 1-5mg once a day) and having incredible results with it reducing all of those symptoms except for numbness. So I found a "compounding pharmacy" here in town and am picking up a 30-day supply later today ($55). My primary says he actually thinks this might work! It's worth a try, especially if it means I can quit taking Lyrica with all of its side effects! In my opinion, it's always good to ask questions and get second and third opinions if you have to. My brother always says, "Remember - doctors are 'practicing' medicine - they don't have all the answers." I guess that's true to a large extent. But with all of us in the "chronic pain" phase of neuropathy, it's good to have hope that there are doctors out there searching for ways to help us. I've also discovered on this 15-year journey that different things work for different people, whether it's medication, PT, exercise, topicals, and even surgeries. I wish all of us on this journey that seems to have no cure the very best. Keep searching and asking questions and sharing information. At least we can maybe help each other stay positive. God bless us all!

@brennankb55 The comment by your brother has a degree of truth. I have back issues and I was convinced that my PN was back related only to find out that I was wrong. When you consider the huge number of causes related to PN, it is no wonder doctors struggle with answers. Some have pain, some don't. Why?? The answer might be related to the cause. Ed

@njed ~ No kidding! There are soooo many different causes for PN. Mine is currently in the "unknown" category. God bless those doctors who truly care about and listen to their patients.