Idiopathic Progressive Polyneuropathy: How to find a specialist?

I thought Thrush had recurred went to ENT His diagnosis " Burning Mouth, polyneuropathy & go to Neurologist ".

Hello,
My name is Todd. Ive been reading posts on this forum for the past 2 years but have never actually posted anything. I have fast (by my standards) progressing idiopathic poly neuropathy. The tingling burning sensation in my hands, feet, arms (to my elbows) and legs (now to my hips) is impossible to ignore most of the day.
I guess what I'm asking you is, what questions should I be asking? I have seen 3 neurologists with no good answers, and the 600mg Gabapentin and 60mg of nortriptyline daily, do nothing.
I would love to find a route cause, and if not, at least a way to slow the progression down and curb the pain.
Please ask me questions as I'm looking for direction and feel like I'm just flailing and a bit on my own.

Todd

@sam1942, Here are discussions where others with similar symptoms have shared their experience and what helps:
-- Burning Mouth Syndrome (BMS): Anyone found any relief?:
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
-- Burning Mouth Syndrome: Anyone had success with compounded mouth rinse:
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-clonazepam/
-- Small Fiber Polyneuropathy:
https://connect.mayoclinic.org/discussion/polyneuropathy/.

Hi Todd, I wished I had some answers for you. It's the pits having neuropathy of anykind and not knowing if there is an underlying cause or if it's genetics, or nerve compression by trauma, old age or something else. My only suggestion is to educate yourself on the condition and use what you learn to ask questions important to you like progression and impact on quality of life.

This site is good for learning more - https://neuropathycommons.org/neuropathy/causes-neuropathy

Todd - I think Mentor John replied in a way speaking for many with PN. I too have idiopathic polyneuropathy, now 8 years in. The 3 docs you've seen can't give you good answers for obvious reasons. I will echo on what John offered. I found a neuro doc near me that I can talk to on my level, I asked her to deal honestly with me as if I were her Dad. She agreed. In most cases, in medicine, I find if you don't ask, they won't tell. When you see your doc, write your questions down in advance and try to get the answers you need and learn as much as you can. Remember, you are not alone in this.

My Grandmother name is Fala, so that is what I use here. I have progressing idiopathic poly neuropathy. I read your post, I found out after a week of Gabapentin, that I am allergic to it ( throat closed) and the only thing that has helped is CBD. It was recommended by my hand specialist when I complained about my feet. ( Some Doctors care about your entire body). I went through the process, got a card and the pain is 1/2 of what it was. This was 5 years ago. I hope your State is permitting Cannabis.

I was on Lyrica, Gabapentin and Cymbalta. None worked for new my condition is my me walk funny and the horrific pain in my hips down my legs are horrible. Gabapentin made me have horrible seizures.

Hello Todd,
I am so sorry to hear about your diagnosis! First and foremost in this day and age in medicine you MUST be your own advocate…….It is very difficult to find a neurologist that is interested or an expert in neuropathy. Do you live near a large medical center?
As a healthcare provider I ask what diagnostic avenues did they proceed to give you your diagnosis of idiopathic polyneuropathy? Did you have an EMG, nerve biopsy, or other imaging? I hear you say that you are continuing to have pain and your medications are not helping, correct? Have you informed your neurologist because the dose of gabapentin you are on is very low. I have CIDP and I started out on 300mg and since increased to 1500mg per day and my pain has dramatically decreased. Now don’t get me wrong I do have bad days but the majority of the time I am so much better. Has your physician mentioned any other types of treatment options for you? Perhaps you should ask him this! Have you ever gone to physical therapy or seen someone in rehab medicine or pain therapy?
There are many organizations for different types of neuropathy and they have great information for both patients and providers. Also, perhaps you can contact Mayo Clinic for more information. Please keep us posted on your progress.
Kim

Hi Todd, I also have a fast-progressing neuropathy that might end up labeled idiopathic. As Kim mentioned you really need to advocate strongly for your care. As others recommended, I would seek out the best neurology department you have access to and have the work done there.

I believe idiopathic often means “we stopped looking” rather than “the cause of your disease is unknown to medicine”, which is how a lot of people take it.

A 2015 paper from the Columbia University Hospital neuro department reported that they were able to assign diagnoses to 2/3 of the patients referred to them as idiopathic. Of course some of their diagnoses were probably wrong, but by doing a thorough work up for each patient, they got past the idiopathic label for quite a few. Even then, they didn’t turn over every leaf: there are hundreds of possible causes.

Of course, if you’ve already been to the Mayo, or similar, they may have already performed the first, second, and third level tests, but you definitely want to go at least that far.

FWIW, I found this book super helpful in understanding the disease, which helps me advocate for myself: “ Peripheral Neuropathy: What It Is and What You Can Do to Feel Better” by Weismann. It is published by Johns Hopkins and was written for patients by an NYU neurologist.

Best of luck with your search.

larry4343 - I am idiopathic and basically, after going to several top-notch hospitals including Mayo and Johns Hopkins, I got the shrugged shoulders. Don't know. Not diabetic and all labs done were normal. So, where did this come from and basically blind side me. Like others with PN it is frustrating, and you are right about the various books available. I've read several and understand this disease much better than before. My next book will be the one you mentioned in your post and thanks for suggesting it. Every piece of information we can learn about PN will help us along the way.