Next course of action for undiagnosed polyneuropathy

@dthomasc
I wonder if you could have taken meds years ago that may have caused it. But I suppose medications have been ruled out.
Mine is believed to be caused from seizure medication, maybe so, but I must take those meds. I took them for 20 years before the neuropathy symptoms started. But the neuropathy and it's complications are better than daily or near daily seizures and being put in long induced comas.
I've had neuropathy for 35 years, what type and what caused it aren't important to me now.
But it sounds like you haven't had it very long so I'd check it out until I was convinced no one knows why. I'd go to Seattle or the Mayo Clinic. There is also a specialist at Stanford University who is an expert in neuropathy. I can't remember his name but I believe he's a pain specialist.
Best of luck to you,
Jake

Good evening @dthomasc and welcome to Connect. I see that Jake has responded. It is always comforting for me to see that he has taken the time to help new members. His response pretty much outlines my current status. I was diagnosed with SFN (small fiber neuropathy) 10 years ago. In retrospect, it feels like my experience with this condition has been more acceptable once I knew the cause. And yet.....I am struggling now trying to face the reality of what feels like a ramped of progressive episode.

Perhaps I can explain. When I was diagnosed with SFN through the skin biopsy technique, I was dumbfounded, to say the least. First, I had never heard of neuropathy. Second....I had been an active individual, participating in group and individual athletics, attending a gym regularly, and reaching out for opportunities in international trekking. And then there was yoga, recovery exercises, etc., etc. etc.

So I was shocked when my neurologist told me that the cause of my form of neuropathy was trauma. Due to having multiple injuries and resultant surgeries, my nerves were intermittently pinched. And of course my response was......O.K. so now we know. Let's get on it and then over it.

Of course that didn't happen. And.....I am still disturbed by the fact that no matter what we do there is no cure. I think I have been in denial for quite some time......totally unwilling to accept the news every year that my SFN has been progressing and will continue to do so.

I found it rather easy to write these words .......no cure, unknown cause, progressive pain........here on Connect and difficult to accept what I would be going through at this point. Essentially @dthomasc, my entire life centers around SFN. And it will continue to "rule the roost".

Like Jake, the type of neuropathy and cause doesn't matter anymore. I have had to modify all of my retirement dreams. I have had to reduce my expectations of participating in activities with my four grandchildren. They can run circles around me both mentally and physically, especially when I have to cope with fatigue and brain fog. So as we approach another Holiday season and a New Year.......I am focusing on "Quality of Life....." and the joy that can be generated from even modified participation in life's opportunities for joy and happiness.

Actually, I look for joy that can be found around us every day. This afternoon, a couple came over to share time, memories, and laughter with us. Tomorrow, I will play Mahjongg with a group at the Community Center. I admit that it is still important to win....but only once a day. Tomorrow evening is an hour of Mindfulness Meditation, a behavioral process that is powerful and supportive. The other players are aware of my disabilities and quietly provide support to ensure that we all enjoy the game.

It would be great to receive a response from you, to know how your thinking and understanding is progressing.

May you be safe, protected, and free of inner and outer harm. Happy Holidays.
Chris

Hello @dthomasc, I'm glad you found Connect. I was in a similar quandary back in 2016 when I decided to see if I could find a treatment that helped my neuropathy symptoms of numbness that I had for well over 20 years. I had avoided seeking a diagnosis because each of my different primary care doctors told me there was nothing they could offer to help the numbness in my feet. I was tested and examined by a Rochester Mayo neurologist and diagnosed with idiopathic small fiber peripheral neuropathy and much to my dismay he told me the same as what my previous doctors did, there are no treatments that will help with the numbness. That started my journey on Connect. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

It sounds like you have already done some research. I thought I would share some of my favorite sites for learning more about neuropathy in case you haven't already found some good ones.
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/
--- Dr. Matthew B. Jensen's YouTube Channel (easy to understand videos to learn more about different neuropathies): https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

Hello, dthomasc (@dthomasc)

My first thought after reading your post was "All too familiar!" I received an idiopathic axonal sensorimotor peripheral neuropathy 15 months ago. For the longest time, I was bound and determined to puzzle out the cause, even though I was being told by one doctor and after another, "Ray, we just may never know." I've largely relaxed into believing that, now, although I still have my "moments"––my Sherlock Holmes moments––when I find myself aching to learn what may have brought about my particular brand of neuropathy. So far, I've turned up no clues. And the other thing you're experiencing, having doctors say, "Let's not set a definite follow-up. Instead, if things get measurably worse, then call me." Today, as I look at my calendar, I see fewer and fewer follow-ups, not because I'm getting healthier and healthier, but because my doctors are tacitly saying, "Why should we burden either one of us with an in-office follow-up when, dollars to doughnuts, I'll have nothing new to tell you?" There were times when I resented a doctor saying that. However, I've since learned to respect their honesty. This is a tough business, this neuropathy business, for all of us, patients and doctors alike.

Cheers!
Ray (@ray666)

Hi, Jake. Yes, one of my primary care's first acts was to see if I was taking anything that could be causing it. He found a side effect buried down in the weeds of a medication I was on, so the initial plan (something that was in his power) was to take me off of it and see whether anything changed after the drug wash-out period. No changes. I still have not gone back on that medication, but it doesn't appear to be the cause.

@dthomasac,

My peripheral neuropathy was diagnosed 10 years ago. My brother was also experiencing peripheral neuropathy that progressed over years to his knees and then his hands. He was in constant pain, even after taking the traditional medicines prescribed.

I decided to see a neurologist at a University Neuroscience Center who specialized in peripheral neuropathy research. He told me Alpha Lipoic Acid (ALA), a supplement, was the only possible treatment to potentially stop the progression of the Neuropathy. It does not work in everyone, but it worked with me and my brother. My neuropathy pain went away and I only have sone numbness in my feet. The repeat nerve conduction studies showed my neuropathy was not progressing and there was some evidence that the nerves were starting to regenerate.

I honestly think that statins were the cause of my neuropathy. When my statin dose was increased to lower my cholesterol, the pain worsened. I stopped stains and I had less pain.

My brother had a miraculous recovery after a few years of taking ALA. His pain is gone and he just has numbness in his toes. He also stopped taking statins.

We both took 600 mg of the Superior Brand of ALA on an empty stomach once a day. He switched to Immunovites R- ALA (screen shot attached) and is now pain free. He follows a strict organic vegetarian diet that is low cholesterol and fat.

You may want to ask your Neurologist if ALA is something you can try.

@dthomasc As you can see by those who have previously posted information, having peripheral neuropathy is very frustrating and we'd all like to find out the cause. I have axonal sensory motor both small and large fiber as diagnosed by Mayo in Rochester, now about 8 years since first getting a diagnosis by a local neurologist. I figured if Mayo can't give me the cause of my PN, then I have to stop searching and focus on, as Chris Trout says, quality of life and she is absolutely right. And that is what I've done for the past 4 years. I've discovered that with PN, being active as possible is important and try to implement a reasonable exercise program. Wish you the best and always remember, you are not alone. Ed

@dthomasc - Like so many others who’ve responded, I am on the same journey being idiopathic. We’ve all had different points in making the transition from exhausting ourselves in trying to find the cause (because we hope that COULD help get us a cure) to putting our energy and focus into optimizing our quality of life with whatever our Neuropathy is.
It was tough for me. I’m a planner - I was not yet 52. I wanted to get back to my professional work and build my retirement for 10 more years, not suddenly be disabled and needing to use those savings so soon. I wanted doctors to help me plan, to give me a clear timeline of expectations so I could be smart in making home and car purchases, getting travel and bucket lists done before I got worse (if I’m going to get worse), or when to start planning to live in assisted care facilities. I got zero help from doctors along those lines. It was very frustrating and I felt helpless. Like others, I was told to come back if things get worse, but I have no idea what they’ll do if I get worse, just confirm I’m worse and since they can’t do anything to help, just tell me to come back again if I get even worser? I’d rather them monitor me more frequently to alert me they see I’m getting worse (or better) so I can get back to adjusting plans smartly! So I understand your frustration and perhaps fear of the unknown, and helplessness in figuring out what to do.
But I found this Mayo Connect group a couple of years ago when doing my own research. I have no idea where I’d be without the experience and guidance of the members and our mentors. My only regret is I didn’t find them closer to the time I acquired my Neuropathy- it could have moved my journey to a better place sooner. My doctors gave me Gabapentin; this group gave me advice and shared research and experiences on subjects ranging from toes to shoes, diets to exercises, vitamins to lotions, alternative medicine to different medication types, and much much more. This group gave me hope and the focus I needed to figure out what best worked for my body and specific ailments to stay as much ahead in this game as I can possibly control.
I’ve taken a lot of the advice on many different things offered by this group. Several trials and errors, but help with spotting snake oil salesmen trying to prey on us. I still take the Gabapentin the doctor prescribed as it happens to be a help for me. The one big thing I prioritize is physical therapy. I take about 2 formal rounds of sessions per year as insurance allows (maybe 10-15 sessions in each set). My PT can spot the changes in my performance and can adjust exercises to keep up with the ever changing effects of Neuropathy on my body. She helps me keep muscles strong and balance maintained. I go back as needed because I tend to start getting less dedicated in doing all of the home exercises and benefit from her evaluation of changes, and her positive reinforcement and motivation to keep as fit as possible for the best life I can achieve.
I hope this forum can help you as much as it has helped me!

I, too, have been diagnosed with severe axonal sensorimotor polyneuropathy. Here is a link to my story on this blog. I am now 95% neuropathy, pain, free
https://connect.mayoclinic.org/comment/645606/

Hello, all!

Me, too: idiopathic axonal sensorimotor PN. So far, I've only been told large fiber, but small fiber? I have my suspicions.

And like what there's of you have said: I go on. After all, what's the alternative? I imagine there are alternatives, but taking one just wouldn't be me. Now, will I still say that umpteen years hence when my PN progresses? I hope so. I honestly hope so. For the moment, I'll just keep doing the things that make me happy, modifying them as needed because of the limitations my PN has placed upon me.

We're a special crowd, pressing on despite adverse circumstances. I'm so glad I found us!

Cheers!
Ray (@ray666)