1. < Neuropathy

Axonal peripheral neuropathy: Finally, a diagnosis!

Posted by Ray Kemble @ray666, Aug 6, 2022

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 Support Group.

artemis1886 | @artemis1886 | Feb 7 9:07am
In reply to @boho44 "Ray: I have axonal peripheral neuropathy. About 15 years ago I noticed a slight weakening and..." + (show)
@boho44

Ray:

I have axonal peripheral neuropathy.

About 15 years ago I noticed a slight weakening and tightening in my thigh muscles. Each time I saw a doctor, I mentioned it. One prescribed therapy, another recommended Tylanol. Most just shrugged and didn't say anything. It gradually got worse over the years, so that I had more and more trouble walking and keeping my balance. But no doctor could tell me what was wrong with me. Finally, my last doctor listened to me, watched me walk, and referred me to a neurologist. The neurologist did a number of tests and reviewed my medical records extensively. His conclusion was axonal peripheral neuropathy. The cause was "genetic."
Finally, a diagnosis! It then made sense. My mother had the same problem for years. She never saw a neurologist or got a diagnosis. We all attributed her walking problems to her arthritis.
But now I'm sure she had axonal PN, and I inherited it from her.
My doctor referred me to a physical therapist who specializes in leg weakness and balance issues. After about six weeks with the therapist, she gave me a work-out regimen which I now follow. I think the exercises have slowed down the PN but of course have not eliminated it. I can walk around our house okay, as I have plenty of chairs, tables, counters, and walls to steady myself. But, outside I use a cane for short walks (parking lot to store) or a walker for longer walks. I do most of our (my wife's and my) food shopping. Walking around the store with a shopping cart is easier (more stable) than a walker.
I imagine some day I will need to use a walker even in our house, and eventually, like my mother, I will not be able to walk at all. But, I continue to do my exercises and hope to put that off as long as possible.

Jump to this post

What is the cause of the neuropathy?


Dr Ann Oaklander is a research neurologist out of Boston. I went to see her for answers. She has a lot of lectures online. She has been researching neuropathy since before2015 and her daughter is a research neurologist. Neuropathy is just the beginning what is causing the damage to the nerves. That question drove me crazy. Mine was autoimmune neuropathy.

Have you had the biopsy to see if you have small fiber neuropathy?
Dr Oaklander helped a lot. I had all ready had the emg/nerve conduction testing and the biopsy for small fiber neuropathy. I had listened to all her videos and wrote down my questions for when I saw her. I was on IVIG from age 10-18 every week. My immune system was very low. She also has a list of labs to be done. I will send them to you if you want them. I had to have them done before she would see me.

REPLY
1 reply
lenjoanmayco | @lenjoanmayco | Feb 7 7:11pm
In reply to @artemis1886 "Neuropathy is diagnosed by emg and nerve conduction test. Small fiber neuropathy is diagnosed by biopsies..." + (show)
@artemis1886

Neuropathy is diagnosed by emg and nerve conduction test. Small fiber neuropathy is diagnosed by biopsies the doctor takes three.

Jump to this post

Thank you for this information. It confirms our decision nto not have a repeat consult with this neurologist.

REPLY
lenjoanmayco | @lenjoanmayco | Feb 7 7:15pm
In reply to @artemis1886 "What is the cause of the neuropathy? https://www.youtube.com/watch?v=KtNnlY6RUdA Dr Ann Oaklander is a research neurologist out..." + (show)
@artemis1886

What is the cause of the neuropathy?


Dr Ann Oaklander is a research neurologist out of Boston. I went to see her for answers. She has a lot of lectures online. She has been researching neuropathy since before2015 and her daughter is a research neurologist. Neuropathy is just the beginning what is causing the damage to the nerves. That question drove me crazy. Mine was autoimmune neuropathy.

Have you had the biopsy to see if you have small fiber neuropathy?
Dr Oaklander helped a lot. I had all ready had the emg/nerve conduction testing and the biopsy for small fiber neuropathy. I had listened to all her videos and wrote down my questions for when I saw her. I was on IVIG from age 10-18 every week. My immune system was very low. She also has a list of labs to be done. I will send them to you if you want them. I had to have them done before she would see me.

Jump to this post

Thank you so much for your encouragement. I would sure appreciate your sending of the list of Labs you had to have done. Len and Joan

REPLY
1 reply
fishnuts99 | @fishnuts99 | Feb 8 9:50am
In reply to @cancerback "My polyneuropathy has gotten to the point where I have orthostatic hypertension , weakness and fatigue...." + (show)
@cancerback

My polyneuropathy has gotten to the point where I have orthostatic hypertension , weakness and fatigue. I
That means my blood pressure drops when I stand up and walk and makes me dizzy. Prolonged standing makes me very weak.

Jump to this post

I know exactly how you feel. I've had lifelong high blood pressure, now I have low blood pressure and constant lightheadedness when standing or walking. Sorry for your troubles.

REPLY
pks3799 | @pks3799 | Feb 8 1:45pm
In reply to @artemis1886 "Did the neurologist tell you what type? My testing Emg/nerve conduction test showed All my autoimmune..." + (show)
@artemis1886

Did the neurologist tell you what type? My testing Emg/nerve conduction test showed All my autoimmune markers high. I was finally diagnosed with sle (lupus) and sjogrens last year by a rheumatologist. I took pictures of my face every day and sent it to him showing my butterfly rash on my face. The lupus diagnosis was in my chart at the hospital from 2009 but until I took pictures of my face everyday did the rheumatologist believe I had lupus. Sjogrens was diagnosed by a biopsy by an ENT and an eye doctor did two test on my eyes. The biopsy was taking four glands out of my mouth. They were inflamed and tested positive for Sjogrens. Just an fyi if you do the biopsy in your mouth I no longer feel that area in my mouth they take the glands between your lip and down below your teeth.

Jump to this post

I never had the rash but other things helped diagnosis
When Sjogrens started I did not know what it was but I had no tears and no saliva, that helped diagnosis
I got Raynauds at the same time . Lupus is in remission,
Sjogrens is improved, No improvement in Rayauds

REPLY
boho44 | @boho44 | Feb 8 2:56pm

I'm 80 years old. I think there's not much point in my getting any more tests done. Fortunately, my axonal PN causes no pain, only severe walking and balance problems. I know those will get worse over time, but as an "old man", everyone is very understanding and helpful with me. In fact, my wife and I are planning to travel a bit in March. I just bought a nice collapsable traveling walker which I will take with me. We'll see how it goes.

REPLY
blessedsista24 | @blessedsista24 | Feb 9 9:10am
In reply to @cancerback "My polyneuropathy has gotten to the point where I have orthostatic hypertension , weakness and fatigue...." + (show)
@cancerback

My polyneuropathy has gotten to the point where I have orthostatic hypertension , weakness and fatigue. I
That means my blood pressure drops when I stand up and walk and makes me dizzy. Prolonged standing makes me very weak.

Jump to this post

I'm 58 and mine started in December of 23
Dizziness and unbalanced walking my primary had every test done on me
And only thing they find is vestibular Hypofunction and neuropathy
And it's really sad because I've been healthy all my life except syncope. But but I had covid in 2022 for 23 days and after that it's been downhill I'm taking therapy for vestibular Hypofunction but I'm using a walking stick now it's been life changing

REPLY
artemis1886 | @artemis1886 | 6 days ago
In reply to @lenjoanmayco "Thank you so much for your encouragement. I would sure appreciate your sending of the list..." + (show)
@lenjoanmayco

Thank you so much for your encouragement. I would sure appreciate your sending of the list of Labs you had to have done. Len and Joan

Jump to this post

Here are all the labs required.
REPLY
1 reply
lenjoanmayco | @lenjoanmayco | 6 days ago
In reply to @artemis1886 "Here are all the labs required." + (show)
@artemis1886

Here are all the labs required.

Jump to this post

Thank you for this list from Dr Oaklander. This will greatly assist us in finding a Neurologist who can use it as a guide. Len/Joan

REPLY
View MoreView Less
Please sign in or register to post a reply.