Do I need to deep dive diagnosis?

If you've had the electrical diagnostic test done, and gotten a diagnosis of idiopathic neuropathy, consider yourself lucky. I went through 3 neurologists, and about 7 years of waiting for some kind of diagnosis before being told by my GP what I have. My last doctor did all the tests available over the course of 3 years before telling me he couldn't do anything else that might help me. Then he retired, so my regular doctor gave me the news that I was fully expecting to hear, I have idiopathic poly neuropathy, and there's no cure, just pain management.
Some medications can help dull the burning and pain, but there's nothing that can stop it. I'm taking 3600mg of Gabapentin a day, along with 1200mg of ALA, and it helps, to a certain extent.

Everything is idiopathic until you
seek a good workup. I would consider
a skin biopsy for small nerve involvement and amyloid stains.
More bloodwork and and a second
opinion if you’re living with it for the rest of your life.

@debbieod, I think I grappled with the same questions with my neuropathy journey which I shared in another discussion here - https://connect.mayoclinic.org/comment/310341/. The only difference it made for me was it forced me to learn more about my condition and it brought me to Connect where I've been fortunate to learn that none of us with neuropathy are alone. Finding Connect and learning what others have shared about their neuropathy journey along with treatments that are available was an eye opener for me. I like the way you posed your question -"Would it make any difference in my outcome - or am I just gathering information?". For me, it did make a difference. I think it helps me make better choices when faced with my neuropathy symptoms and ways to slow the progression, provide some kind of relief and being able to hopefully accept what I can't change. I didn't have the biopsy done to confirm my diagnosis because it would not have made any difference in the treatment for my idiopathic small fiber peripheral neuropathy because I only have some numbness and no real pain and all of the medical treatments are for pain relief.

The electrical test is objective and will tell you to what extent your nerves are disfunctional in terms of transmission speed up and down.
It may also tell you whether it's the nerve or the nerve sheath.
Fortunately, for me it's the nerves, so I have balance problems and sometimes night cramps, but no pain.

If you have a diagnosis and your symptoms are consistent with PN, imho there is no point is seeking another opinion. You just have to try the various mitigations you will read about on here, and see what works best for you.

It's sad that we have this apparently random problem. Perhaps one day the causes will be better understood.

Gathering info never hurts. I am grappling with the question of seeking an opinion from a second neurologist. Beside the EMG test, did you have any blood work to rule out autoimmune diseases that might have caused your neuropathy i.e., RA, MS, fibromyalgia, etc. I also learned that many more people have neuropathy but remain silent about it, especially if they are not in any pain. This website may help you see what works for some. The disease is certainly mysterious--it came to me and to others as an unwelcome surprise but the knowledge you gain from this site and other forums will help you navigate PN and this can make a difference in other aspects of your health care and social life. I wish you the best! Laura

@arcuri24 Hi Laura - No doubt, getting a second opinion is a personal decision and will insurance cover the costs. I did get an opinion at Johns Hopkings in Maryland and another opinion at Mayo in early 2020. The diagnosis from both were a match, idiopathic axonal sensory motor. I felt the second opinion was needed to put my mind at ease. At that point, I was able to close the chapter on what I have. Of course, the jury is still out on the why. Nonetheless, at that point, I decided after a second opinion it was time to learn all I could about my PN and how to best live with it. And this site this site has been a tremendous help from our mentors and those suffering with PN. Ed

@debbienod I and most of us here can totally relate! I’m on my 3rd neurologist - a young smart guy, who confirmed what my previous 2 retired neurologists diagnosed. Idiopathic (large fiber) sensor motor Axonal Polyneuropathy . My first neuro did all the nerve conduction studies. They can tell whether it’s large or small fiber. He also ordered a brain CT scan and numerous blood tests.
But I also have ME/CFS so I’ve had a bazillion other autoimmune tests. My first neurologist’s original dx was correct as those tests are objective.

The only difference having the 3rd new neurologist made was in confirming the probable cause of mine. Even though mine is still officially classified as “Idiopathic “, my nerve damage began almost 40 years ago when I had an acute case of Epstein Barr Virus that attacked my nervous system. I never recovered and developed ME/CFS (Chronic Fatigue Syndrome). Over the last 20 years the neuropathy has progressed to where I had to start seeing neurologists. This latest neurologist explained what I already suspected. My PN was initially caused by nerve damage from the EBV virus which in turn caused an autoimmune response. There’s no specific test to prove that, so the cause is based on observation and research. I have autoimmune antibodies- which are non specific.

I do believe that a lot of ”idiopathic” PN cases may be caused by viruses. The EBV virus in particular, is proving to be the cause of many neurological diseases and it is a ubiquitous virus that lies dormant in most of the population.

Like you, I’ve wanted answers, especially since I also have ME/CFS which has rendered me disabled most of my adult life. But that said, there’s still nothing for it. And like our Volunteer Mentor @johnbishop wisely stated, having the knowledge hopefully helps us to accept what we can’t change.

NJ Ed Thanks for sharing your views on second opinions. I was diagnosed with Celiac disease, autoimmune in nature, and that could have been the reason I have PN. I do know that since I have gone gluten-free, I am breathing easier and am no longer losing weight. I still think that the methylprednisone I took might have triggered my neuropathy. I do not think I can find out if that was the cause. So like you, I am living with PN and it does not cause pain or balance issues so in a way, I am fortunate. And, truly, this website is very informative.

I think it is absolutely vital to figure out the cause and type of your neuropathy. Idiopathic means they do not know the cause. Unless you know the cause you cannot tailer effective treatment to heal your nerves you can only do palliative care and try this and try that hoping you will try something that helps your nerves regenerate.

Sorry to say this, but our nerves cannot regenerate. Once they're damaged or have died that's it, game over.