Axonal peripheral neuropathy: Finally, a diagnosis!

Posted by raykemble @ray666, Aug 6 9:33am

Hello!

I know I've been here before, but probably not for many months For the past few years, I have seen specialist after specialist hoping to finally receive a diagnosis. Only last Monday I was told by the most recent of several neurologists that I have axonal (loss) peripheral neuropathy. Now that I have a name to attach to my problem, I would love to talk with others who have received similar diagnoses. I have such basic questions: What to do now? What should I expect? Where do I go from here?

Ray (@ray666)
Denver

Interested in more discussions like this? Go to the Neuropathy group.

Hello Ray @ray666, I'm happy to hear you finally received a diagnosis and have a name to attach to your condition. @revfluegel @daviddemello @pfbacon @silvern12 and @dbeshears1 have posted about having axonal peripheral neuropathy in other discussions and may be able to share their thoughts and suggestions with you.

I was not sure exactly what axonal peripheral neuropathy was so had to look it up.
"What is the difference between axonal and peripheral neuropathy?
Demyelinating neuropathy characteristically shows a reduction in conduction velocity and prolongation of distal and F-wave latencies, whereas axonal neuropathy shows a reduction in amplitude."
— Peripheral Neuropathy – Clinical and Electrophysiological Considerations:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4329247/
Did your neurologist suggest or discuss any treatments with you?

REPLY

No basically just meds which i do not want to take I did not like how I felt I go to physical therapy for balance and gait. Pain has subsided a lot Really feel covid booster made it worse. But stiffness in feet and legs has me off balance. Trying to get into Mayo Not much luck yet

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Hi Ray – Welcome back, I am glad you got a diagnosis, however vague, and thanks @johnbishop for linking us. I am going to be honest, when I read all the discussions about those diagnosed with Small Fiber Neuropathy (SFN), so many of the symptoms are almost identical that I have learned a lot from those discussions on managing symptoms. I was hit suddenly with my axonal PN (idiopathic), within 2 weeks of first sign of weakness going on, I became wheelchair bound for 6 months. I can walk/waddle short distances now and am good around the house, but basically use a walker, and learned to drive. I just can't squat, and my arms and legs have numbness, tingling, pain, and weakness. I get by typing and writing, but I lost a lot there. They are also very sensitive to heat and cold, which is usually caused by my body, just not external temperature.
My 2 best friends have been physical & occupational therapy and Gabapentin. PT got my balance back, helps with gait, and keeps me as strong as I can get. I pretty much use as much as insurance allows, and it's worth my co-pay. Gabapentin took a while to kick in; I was in a rehab facility at the start, and as dosage got right, it probably took about 5 weeks to where I didn't have to wear gloves all day & night. I still have to wear socks to bed and all day. Heat intolerance is normally external temperature related. So I'm not as comfortable in hot sun and have to control water and car temperatures that hit my hands and feet directly. Gabapentin has really gotten that aspect more tolerable, and helps with the nerve pain, and reduced the amount of numbness and tingling (but that's 24/7). If I miss a dose of Gabapentin I pay for it unfortunately. I tried Lyrica & others, but everything made me dopey, and with my condition, I'm not willing to risk a fall going to the bathroom in the middle of the night.
From other discussions here and mostly from those with SFN, I've learned so much about things to try, from shoes, toe guards, exercises, lotions, vitamins (alpha lipoic acid), lidocaine, Integrative Medicine (I liked Acupuncture), and the biggest thing, Positive Thinking from our great mentors. I have been reading with interest about CBD type therapies but have not tried any of them. So, read on, and you might be surprised how much synergies we have with SFN remedies! Best wishes on living as actively as we can with this thing, while we still hope for a cure!

REPLY
@johnbishop

Hello Ray @ray666, I'm happy to hear you finally received a diagnosis and have a name to attach to your condition. @revfluegel @daviddemello @pfbacon @silvern12 and @dbeshears1 have posted about having axonal peripheral neuropathy in other discussions and may be able to share their thoughts and suggestions with you.

I was not sure exactly what axonal peripheral neuropathy was so had to look it up.
"What is the difference between axonal and peripheral neuropathy?
Demyelinating neuropathy characteristically shows a reduction in conduction velocity and prolongation of distal and F-wave latencies, whereas axonal neuropathy shows a reduction in amplitude."
— Peripheral Neuropathy – Clinical and Electrophysiological Considerations:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4329247/
Did your neurologist suggest or discuss any treatments with you?

Jump to this post

Good morning, John

Thanks for getting back to me. No, my neurologist did not suggest any at-home practices. What he has done, though, is refer me to another neurologist for a second opinion. (I was surprised that my doctor suggested a second opinion, rather than I, the patient, making the request.) At the moment I'm waiting for that referral to go through so that I can make an appointment.

There's a wonderful irony at play here: the first time I had asked my primary if I might meet a neurologist, I was sent to meet with a doctor at the local hospital (less than a mile from home), which led (long story short) to me seeing a string of specialists with offices all over the map; this most recent––the fellow who's at last given me a diagnosis––has now referred me back the very hospital where all this began. My consolation? With gas prices so high, at least now I'll be saving money!

Ray (@ray666)

REPLY

Ray – I meant to ask, was this diagnosed by a nerve conduction study?

REPLY
@dbeshears1

Hi Ray – Welcome back, I am glad you got a diagnosis, however vague, and thanks @johnbishop for linking us. I am going to be honest, when I read all the discussions about those diagnosed with Small Fiber Neuropathy (SFN), so many of the symptoms are almost identical that I have learned a lot from those discussions on managing symptoms. I was hit suddenly with my axonal PN (idiopathic), within 2 weeks of first sign of weakness going on, I became wheelchair bound for 6 months. I can walk/waddle short distances now and am good around the house, but basically use a walker, and learned to drive. I just can't squat, and my arms and legs have numbness, tingling, pain, and weakness. I get by typing and writing, but I lost a lot there. They are also very sensitive to heat and cold, which is usually caused by my body, just not external temperature.
My 2 best friends have been physical & occupational therapy and Gabapentin. PT got my balance back, helps with gait, and keeps me as strong as I can get. I pretty much use as much as insurance allows, and it's worth my co-pay. Gabapentin took a while to kick in; I was in a rehab facility at the start, and as dosage got right, it probably took about 5 weeks to where I didn't have to wear gloves all day & night. I still have to wear socks to bed and all day. Heat intolerance is normally external temperature related. So I'm not as comfortable in hot sun and have to control water and car temperatures that hit my hands and feet directly. Gabapentin has really gotten that aspect more tolerable, and helps with the nerve pain, and reduced the amount of numbness and tingling (but that's 24/7). If I miss a dose of Gabapentin I pay for it unfortunately. I tried Lyrica & others, but everything made me dopey, and with my condition, I'm not willing to risk a fall going to the bathroom in the middle of the night.
From other discussions here and mostly from those with SFN, I've learned so much about things to try, from shoes, toe guards, exercises, lotions, vitamins (alpha lipoic acid), lidocaine, Integrative Medicine (I liked Acupuncture), and the biggest thing, Positive Thinking from our great mentors. I have been reading with interest about CBD type therapies but have not tried any of them. So, read on, and you might be surprised how much synergies we have with SFN remedies! Best wishes on living as actively as we can with this thing, while we still hope for a cure!

Jump to this post

What is a tie guard supposed to do?

REPLY
@jip499

What is a tie guard supposed to do?

Jump to this post

We’ve had recent discussion with some of us experiencing claw or hammer toes, and it was shared some inexpensive products out there (Amazon) like toe separators or splints that can help. @johnbishop shared a link to discussion on surgical remedy as well.

REPLY
@dbeshears1

We’ve had recent discussion with some of us experiencing claw or hammer toes, and it was shared some inexpensive products out there (Amazon) like toe separators or splints that can help. @johnbishop shared a link to discussion on surgical remedy as well.

Jump to this post

Here’s the link to the post on hammer toes –
https://connect.mayoclinic.org/comment/728388/

REPLY

To Ray – In Feb 2020 Mayo in MN gave me the idiopathic axonal sensorimotor PN diagnosis. They did MANY tests. I went to Mayo with the idea in mind OK, what can this be? It was explained to me that with this type of neuropathy, there is not much that can be done with respect to any meds helping this condition. I experience no pain, only that tight sock feeling, numbness toes to shins and very poor balance and bi-later drop foot. One neurologist said to me I want you to keep moving. Keep walking. I never forgot what he said and that was in 2017. The diagnosis of axonal PN now means we have to figure out how to do things differently … not stop doing things. I feel remaining active is vital and yes, not easy. I walk slow with supports for drop foot and at times with a cane but my wife and I continue to travel each month to our vacation home and I'm determined to keep moving. Everyone has a choice, I've made mine and I believe keeping active will slow down the progress of my PN which is perhaps the best we can do. Wish you the best and my advise….keep moving.

REPLY
@njed

To Ray – In Feb 2020 Mayo in MN gave me the idiopathic axonal sensorimotor PN diagnosis. They did MANY tests. I went to Mayo with the idea in mind OK, what can this be? It was explained to me that with this type of neuropathy, there is not much that can be done with respect to any meds helping this condition. I experience no pain, only that tight sock feeling, numbness toes to shins and very poor balance and bi-later drop foot. One neurologist said to me I want you to keep moving. Keep walking. I never forgot what he said and that was in 2017. The diagnosis of axonal PN now means we have to figure out how to do things differently … not stop doing things. I feel remaining active is vital and yes, not easy. I walk slow with supports for drop foot and at times with a cane but my wife and I continue to travel each month to our vacation home and I'm determined to keep moving. Everyone has a choice, I've made mine and I believe keeping active will slow down the progress of my PN which is perhaps the best we can do. Wish you the best and my advise….keep moving.

Jump to this post

You are right there is no cure yet, but

I just wanted to share with you, that I had some of the same pain symptoms. My diagnosis is severe axonal sensorimotor polyneuropathy. It took me six years to this treatment that actually works! If you would like to know more about the RST Sanexas treatment that I got I would gladly send you my story. Let me know. Wish you the best!

REPLY
@duquer

You are right there is no cure yet, but

I just wanted to share with you, that I had some of the same pain symptoms. My diagnosis is severe axonal sensorimotor polyneuropathy. It took me six years to this treatment that actually works! If you would like to know more about the RST Sanexas treatment that I got I would gladly send you my story. Let me know. Wish you the best!

Jump to this post

Duquer – very interesting. How do you want to send to me? Ed

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