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.

@ch665296f

I also have been diagnosed with axonal sensory neuropathy along with some degenerating discs and lumbar spinal stenosis. I am wondering if anyone has had any incontinence issues. Due to my prostatectomy nearly 6 years ago, I feel that my incontinence is getting worse. Any thoughts?

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@ch665296f, There is another discussion where members have posted about your question here:
-- Do you have urinary incontinence after prostatectomy & radiation?: https://connect.mayoclinic.org/discussion/urinary-incontinence-1/

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@ch665296f

I also have been diagnosed with axonal sensory neuropathy along with some degenerating discs and lumbar spinal stenosis. I am wondering if anyone has had any incontinence issues. Due to my prostatectomy nearly 6 years ago, I feel that my incontinence is getting worse. Any thoughts?

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You may need to be tested for autonomic neuropathy, which can cause incontinence. I'm not sure if that possibility would apply to your case, but you could ask the neurologist.

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I was diagnosed with axonal peripheral neuropathy in February 2017 so welcome to an exclusive club, we are special. I also have Parkinson’s so I am extra special.
The axonal bit means that the axons on your nerves are degenerating so gradual loss of bodily functions. The peripheral bit means you lose feeling in your feet and lower legs and possibly hands so affects walking and balance. No treatment no cure, just exercise and a positive attitude and remember there is always someone worse off. Try and find a neurology exercise group. Bowel and bladder management is very difficult. I see a very good pelvic floor physiotherapist. Keep busy and enjoy every day

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@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.

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To NJ Ed
I have bi-lateral drop foot due to axonal peripheral neuropathy. For several years I was using AFOs that fit inside my shoes. I even had custom made AFOs that did not work for me at all. I changed orthotic clinics and learned about TurboMed AFOs. These AFOs clip to the outside of your shoes and are a game changer! I wear shoes that actually fit my feet and have much better mobility. You might want to check them out at: Turbomedusa.com

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@mjmarshall - Thanks for the information! The odd part is that I rarely see people out and about with AFO's. The AFO's I currently use work for me and provide much improved balance and control my drop foot. However, I am always looking to improve things and I will definitely check out the info on your post. Again, thanks, much appreciated. Ed

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@pacer3702

You may need to be tested for autonomic neuropathy, which can cause incontinence. I'm not sure if that possibility would apply to your case, but you could ask the neurologist.

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My neurologist said there was no test for autonomic neuropathy. What is the test?

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I have weight bearing loss of balance from either my feet and/or my legs. I go for SFN biopsy in a few weeks. EMG was normal. I was finally diagnosed by a new rheumatologist who recognised my Sjogren's symptoms. No pain, no numbness, no tingling. I do not know if it is axonal or what part of the nerves are involved. I just went for 5 days of IvIg (I was also IgG low) and will continue with 1 infusion every 3 weeks for 3 months. Anyone else have anything like this?

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Axonal doesn't mean "loss". It means long nerve cells as opposed to short fiber cells.
ditions like multiple sclerosis or Guillain-Barré syndrome are examples of demyelinating neuropathies.
Symptoms of axonal peripheral neuropathy can vary depending on which nerves are affected and the underlying cause. Common symptoms may include:

Numbness or tingling in the affected areas.
Muscle weakness or atrophy.
Loss of reflexes.
Burning or shooting pain.
Difficulty with coordination and balance.
Sensory disturbances, such as hypersensitivity or loss of sensation.
Treatment for axonal peripheral neuropathy depends on the underlying cause. In many cases, managing the underlying condition (e.g., controlling blood sugar levels in diabetes or discontinuing the use of a toxic medication) can help slow or halt the progression of neuropathy. Medications may be prescribed to alleviate pain or other symptoms, and physical therapy can be beneficial for improving strength and mobility.

Early diagnosis and management are crucial in addressing axonal peripheral neuropathy to prevent further nerve damage and improve the patient's quality of life. Neurologists and other medical specialists are typically involved in the evaluation and treatment of neuropathies.

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@njed

@mjmarshall - Thanks for the information! The odd part is that I rarely see people out and about with AFO's. The AFO's I currently use work for me and provide much improved balance and control my drop foot. However, I am always looking to improve things and I will definitely check out the info on your post. Again, thanks, much appreciated. Ed

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What do you mean AFO’s?
I also see vey few messages from people with axonal on.
A I also have a spinal stenosis which affects my balance and walking.

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@daj3333

My neurologist said there was no test for autonomic neuropathy. What is the test?

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QSART test and sweat test. The sweat test is only available at a few locations.

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