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.

dabbs | @dabbs | Mar 2, 2023

Cat, Your definitely not alone!….David

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1 reply
dabbs | @dabbs | Mar 2, 2023
In reply to @dabbs "Cat, Your definitely not alone!….David" + (show)
@dabbs

Cat, Your definitely not alone!….David

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Like you, I had a type A personality. Didn’t mind going into burning buildings, or taking care of sick or injured patients. Always stayed in shape and spent endless hours in the gym. After my injury, and after my year of digging a deep hole , I finally reinvented myself. To me that was what saved me. I take life day by day. Some good, Some not so good. Regardless, I know there are others that are in worse situations. I don’t sit and focus on what I can’t do but what I can do. When we’re young and healthy we have a tendency to take things for granted. I don’t anymore! Hang in there and yes there will be the occasional road block but you’ll find there are detours to them….David

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artistwagoodi | @artistwagoodi | Mar 2, 2023
In reply to @johnbishop "@artistwagoodi - There is a discussion on Ataxia that might be helpful for connecting with other..." + (show)
@johnbishop

@artistwagoodi - There is a discussion on Ataxia that might be helpful for connecting with other members.

--- Ataxia: https://connect.mayoclinic.org/discussion/ataxia-1/

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Thank you, John.
I've been quiet since I joined this forum trying to get it together to voice my thoughts, reading/researching when I can allow myself the time for the reality of this devastating disease.
I appreciate all that I see you do.

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NJ Ed | @njed | Mar 3, 2023
In reply to @thecatnthehat "Wow! I guess I shouldn't be amazed but I am. I am just like that- everything..." + (show)
@thecatnthehat

Wow! I guess I shouldn't be amazed but I am. I am just like that- everything is visual because I can't tell otherwise and I'll fall down. I use my elbow on the wall of the shower and it's like a magic trick! Take my elbow off the wall, fall down. Keep my elbow touching the wall, everything is fine.

They're not telling you the endgame because they don't know. Nerves rupture and communication is lost and you lose control of the part they talked to you about. That could be a leg, or both. That could be organs. That could be your diaphragm and you can't breathe (that's common)... they don't have a way to know how or when.

Don't read this like doomsday prophecies... it could be a LONG time or a short time - just like anybody else... life is fragile and fleeting.

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Just a suggestion on the shower comment - I have axonal polyneuropathy and balance is an issue in the shower. On Amazon, I found these grab bars that have terrific suction cups, 12 inches long - about $29 for pack of two and I have two in all showers and kept in suitcases. When we travel, these go with me. They are located under shower grab bars suction. These work well and anybody with balance issues should try these.

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lecowing | @lecowing | Mar 3, 2023
In reply to @artistwagoodi "When I close my eyes, I lose all sense of balance. I need 3 point contact..." + (show)
@artistwagoodi

When I close my eyes, I lose all sense of balance. I need 3 point contact when washing my face at the sink or sudsing my hair in the shower. I can't look up at the stars without leaning against a stabile fence, post or companion. I don't know if I've lost a sock or shoe until I visually see it's not on my foot. I don't believe I can ever work in my darkroom again. Recently, while roaming the internet for information on Anti MAG Antibodies, I found there's a name for this lack of sensation. Sensory Ataxia. It is one of the symptoms of this disease. My neurologists never put or gave me the name for what I am experiencing. The first neurologist explained that if the book of neurology were a foot thick, what is currently known is about maybe 1/2" thick. I can't get a straight answer from them about how this disease will progress, so I can prepare for end of life issues. I guess they're trying to give me hope but, I still want to know.
I've read about the excruciating pain that comes with neuropathy but, I was told this is not part of my disease; one thing in my favor that I can be grateful for. However, I came across an article about neuropathy pain, specifically diabetic neuropathy. It may help other types of neuropathy but, it needs more study. Check this out:
https://medicalxpress.com/news/2023-02-spinal-cord-diabetic-neuropathy.html
I love that your doctor's are allowing you to keep riding your beautiful bike. The disability license plate is a hoot. Stay safe and good luck.

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Your first 3 sentences describing your condition are the same as mine, but I also have numbness in my hands.

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3 replies
thecatnthehat | @thecatnthehat | Mar 3, 2023
In reply to @lecowing "Your first 3 sentences describing your condition are the same as mine, but I also have..." + (show)
@lecowing

Your first 3 sentences describing your condition are the same as mine, but I also have numbness in my hands.

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I've had that as well. Pregabalin helps. Also Alpha Lipoic Acid which is OTC and inexpensive. I bought a big bottle of that on Amazon. Actually at one point last year I was numb/tingling all the way up to my chest and in a wheelchair. So at least in my experience, the situation is fluid and you can get better or worse depending on the level of inflammation you currently have.

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1 reply
artistwagoodi | @artistwagoodi | Mar 3, 2023
In reply to @lecowing "Your first 3 sentences describing your condition are the same as mine, but I also have..." + (show)
@lecowing

Your first 3 sentences describing your condition are the same as mine, but I also have numbness in my hands.

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It has started in my fingertips, too 🙁
I'm trying to figure out what I'll do if it takes all the feelings in my working hands.

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2 replies
thecatnthehat | @thecatnthehat | Mar 3, 2023
In reply to @thecatnthehat "I've had that as well. Pregabalin helps. Also Alpha Lipoic Acid which is OTC and inexpensive...." + (show)
@thecatnthehat

I've had that as well. Pregabalin helps. Also Alpha Lipoic Acid which is OTC and inexpensive. I bought a big bottle of that on Amazon. Actually at one point last year I was numb/tingling all the way up to my chest and in a wheelchair. So at least in my experience, the situation is fluid and you can get better or worse depending on the level of inflammation you currently have.

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I don't know if this will help anyone but hold on to hope. The photo in the wheelchair was taken In August 2022. The photo on the race track was taken December 18th 2022. I went from not being able to walk, to being able to ride (not really well but I rode) a Superbike in that amount of time. This thing goes up and down. Unfortunately, all you can do is go up and down with it.
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thecatnthehat | @thecatnthehat | Mar 3, 2023
In reply to @artistwagoodi "It has started in my fingertips, too :( I'm trying to figure out what I'll do..." + (show)
@artistwagoodi

It has started in my fingertips, too 🙁
I'm trying to figure out what I'll do if it takes all the feelings in my working hands.

Jump to this post

You can't think like that. It's not going to do you any good to worry about something that hasn't happened to you yet.

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lecowing | @lecowing | Mar 3, 2023
In reply to @artistwagoodi "It has started in my fingertips, too :( I'm trying to figure out what I'll do..." + (show)
@artistwagoodi

It has started in my fingertips, too 🙁
I'm trying to figure out what I'll do if it takes all the feelings in my working hands.

Jump to this post

I have been unable to touch type for quite some time (years) and I have a real difficult time buttoning a shirt or turning pages of a newspaper or magazine. It has been a slow progression so you will probably be OK for quite a while.

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