Axonal peripheral neuropathy: Finally, a diagnosis!

Good morning, rajeshtarakada

I can't be sure your post of only three hours ago is in response to my original post, which I see I left four years ago. I was a mere 77 then, I'm 81 now. I wish I could resort wholly good news. I'm not able to do that. If there's one bit of good news I can impart it's that I'm still getting around (using a cane more and more), have fallen only twice (both times in my kitchen; both times when both my microwave and stove were calling for my immediate attention, and therefore both times: stupid me!), and I remain in good spirits about most everything. That's my three-part bit of good news. My not-so-good news? My balance has deteriorated. I'm still fortunate in having no pain, but I am wobblier than I was four years ago. And despite all the leg-strengthening I and my PT do, my legs are still not as strong as I would like them to be. I keep plugging away, though. I'll never stop. That's just me, I suppose. And I'm thankful that me is me. 🙂

I wish you and your mother all the best. Keep us posted, rajeshtarakada, on how your mother is doing.

Cheers!
Ray (@ray666)

@carayjoh58 look for a neuromuscular neurologist. They specialize in neuropathy.

I’m sorry you’re going through this. When I read your post, I recognized some of what you’re feeling—the relief of finally having a name for what is happening, followed almost immediately by the question, “Okay, now what?”

I also have severe axonal neuropathy. In my case, it is a severe axonal sensorimotor polyneuropathy that developed after a very serious illness. I’ve been dealing with the effects for years.

One thing I’ve learned is that “axonal peripheral neuropathy” describes the type of nerve damage, but it doesn’t necessarily tell you why it happened or what your future will look like. Those are important questions to ask your neurologist. I would ask what they believe caused yours, how extensive the nerve damage is, whether both your sensory and motor nerves are affected, and what your EMG/nerve-conduction study shows.

Please don’t assume that someone else’s experience—including mine—is automatically going to become yours.

My own road has involved a great deal of rehabilitation and learning how to live with what my body can and cannot do. I still deal with significant problems, particularly balance and mobility, but I’ve also learned that a diagnosis doesn’t tell the whole story of what a person can still accomplish.

If I could tell you one thing from my experience, it would be this: take it one problem at a time. Get as clear an explanation as you can from your neurologist about the cause and severity of your neuropathy, and ask specifically what can be treated, what rehabilitation might help, and what you can do to preserve or improve the function you have.

You finally have a diagnosis. That may not be the end of your questions, but it gives you a much better place to start asking the right ones.

I wish you the very best. If sharing what I’ve learned from living with severe axonal neuropathy would help you, I’d be glad to tell you more about my experience

@ray666 ... Your story is quite similar to mine, especially seeing multiple specialists and finally getting a solid diagnosis. Honestly, I have yet to he diagnosed with Axonal Neuropathy by a neurologist, but I do believe that will be the "final diagnosis" if they ever choose to name it. I've read a good deal about it and it describes my symptoms too well. Anyway... onward and upward with Gabapentin and PT helping me through. Crazy disease!! All the best to you...

I believe that is also what I have... Axonal Neuropathy. From what I've learned doing some research, since my neurologist seems unfamiliar and not interested... is that there is no cure, so they treat the symptoms. Gabapentin is popular for left over pain. There may be a few other medications of choice for discomfort. Physical therapy for weakness, mobility and/or balance assistance. My therapists end our sessions also with heat packs and TENS (electrical stimulation) treatments. And assistive devices as necessary. I use a cane for stability since both legs are now a bit weak and I do have balance issues. I fell out of the tub so I am ordering a shower chair. Things like that to provide whatever support you need. I haven't learned of much else. I believe it is a chronic condition that we learn to live with and hope it doesn't debilitate us any further. They have suggested I avoid stress. I will also be avoiding any further COVID Vaccines, my choice not doctor advised, as I believe the initial Vaccines and the boosters have triggered new and life altering neuropathy events for me. I don't want to experience any more. I hope this is helpful information. If you would like links to any references, let me know. I will try to provide. And if you learn anything new and helpful , please post on here. We all need encouragement. 😊

@carayjoh58 It is indeed a crazy disease! I've had to learn that, when what you have is "idiopathic," not to expect too much from a doctor. I still remember my first EMG, how, when he was done, the doctor drifted away from the exam table rather than coming to me directly with the results. He stood looking out the window for what to me felt like an hour, but was probably more like two minutes. I know now the doctor was simply collecting his thoughts, knowing he had to tell me my PN had a unknown cause and there was little or anything he could do for me. Best wishes to you, carayjoh58! –Ray (@ray666)

@ray666 I guess we need to remember that doctors are humans. The fact the doc wanted to collect his thoughts and present the PN diagnosis in the best way he could was I'm sure appreciated. When I went to Mayo in MN, at the end of the testings, the neurologist walked out to discuss the final diagnosis with me, and I knew it wasn't good. The look on her face said it all. She was disappointed to inform me there is no cure for my type of PN and both my wife and I noticed a tear in her eye. Oddly enough, I felt bad for her. Now, 6 years later, she was 100% correct on everything she told me. I consider her to be one of the best neurologists I ever met. It was obvious she cared.

First, I feel bad for all of us. No matter the diagnosis,or how we got this thing, neuropathy of any type is terrible. I have an underlying autoimmune problem, which gets accentuated with any type of vaccine. I was fine until I took the shingles vaccine, that gave me PMR (taking kevzara for that now) , then one Moderna shot that accentuated that into my neuropathy. (But no Dr will admit that is the cause) I had my emg, saw the motor nerve specialist, said he thought I had polyneuropathy maybe caused by my being type 2 diabetic... and here have some gabapenton. No fix, live with it. I declined the gabapenton as I didn't have pain.
I've decided not to pursue any further diagnosis, and basically live with it. Take some suppliments (r-lipoic acid works the best for me)
My walking is the worst of my troubles, weak legs and painful hips (osteoarthritis or the pmr, or the neuropathy, or disc troubles in my back. who knows, it just hurts) so we just go on day to day. They havnt put me into an urn yet...

@njed Good morning, Ed. Our two paths through this PN experience continue to run in parallel. It's no wonder I check in with you from time to time to ask things like, Has this also happened to you yet? When was its onset? Have you found anything that gives you relief? You write, "Oddly enough, I felt bad for [the doctor]." I don't find that odd at all. I think its great that you could feel some of what your doctor was feeling, Empathy is a commodity sadly missing in the world today. Here's wishing the best possible day today! –Ray

Hi Ray, like you I am in my early 80s with gradually progressing PN, probably of a diabetic etiology. I have no pain but progressive paresthesias, affecting my gait, balance, etc. Here is something I posted today in response to some comments in another thread:

There is some experimental data suggesting a red light benefit via improved micro-circulation, etc. but no conclusive clinical data. There is better evidence in support of some magnetic and electrical therapies, though again most of this data is very preliminary. The same goes for shock wave and hyperbaric oxygen therapies. So-called "axon therapy" is a magnetic neuromodulating approach developed by Neuralace Medical and it has been FDA cleared for the treatment of diabetic peripheral neuropathic pain and some other indications, which continue to expand. It has been used at some VA hospitals and some major medical centers. No claims are made for nerve regeneration, but there is some very preliminary suggestion that this might be an additional benefit. (As far as the pain goes, Neuralace reports that 87% of those completing the treatment protocol experience very significant pain reduction.) Topical Qutenza has also been FDA approved for the treatment of diabetic peripheral neuropathy pain, and some post-approval data indicate that it may confer some neuro-regenerative benefit. On a personal note, I've tried red-light therapy daily using one of the better devices for many months without much, if any, subjective improvement in my diabetic PN. I plan to try pirenzepine if I can get into WinSanTor's "right to try" program in the state of Montana and/or the Axon therapy. I have also tried "scrambler therapy" in Italy where it was developed without benefit, though little was expected as that therapy is primarily directed at those with pain issues rather than, predominantly, paresthesias. If pirenzepine eventually gets FDA approval it will become the first disease-modifying PN treatment, whereas all the others relate only to symptomatic pain relief.