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Axonal Sensorimotor Polyneuropathy: Looking for someone to relate

Posted by Laura @laurask, Mar 16, 2020

I apologize in advance for any grammatical mistakes. Dictation isn’t always my friend. Hello! Just stumbled upon this website and hope to find someone like me. My name is Laura: 26 years old and live in North Carolina. Eight months ago, I began to lose feeling in my toes, feet, leg above the knee, and from my elbow down. I was admitted to the hospital for over one month, as well as appointments at top rated institutions. My current diagnosis is systemic symmetric sensorimotor subacute axonal polyneuropathy. I experience extreme soreness as if I ran a marathon. My life is playing the violin and I am no longer able to do that. I’ve never been heartbroken like this before. Hoping to find someone who understands and relates.

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

casey1329 | @casey1329 | Sep 1, 2022
In reply to @johnbishop "Hi @bvw, You will notice that we merged your post with an existing discussion on the..." + (show)
@johnbishop

Hi @bvw, You will notice that we merged your post with an existing discussion on the condition so that you could meet @njed @laurask @jimhd and others. If you click the link below, it will take you to the top of the discussion so that you can read what others have shared:

-- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate:
https://connect.mayoclinic.org/discussion/someone-to-relate/

One of the best explanations of diagnosing the different neuropathies in an easy to understand way that I have found is by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
https://www.youtube.com/watch?v=3FrQ7Glvgok

He also has a YouTube channel that has a lot of great information if you want to learn more about the conditions - https://www.youtube.com/c/MatthewBJensen

Jump to this post

Thank you for the YouTube video. It cleared up a lot for me and allows me to have a much better understanding of my husband's condition.

REPLY
NJ Ed | @njed | Sep 2, 2022
In reply to @johnbishop "Hi @bvw, You will notice that we merged your post with an existing discussion on the..." + (show)
@johnbishop

Hi @bvw, You will notice that we merged your post with an existing discussion on the condition so that you could meet @njed @laurask @jimhd and others. If you click the link below, it will take you to the top of the discussion so that you can read what others have shared:

-- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate:
https://connect.mayoclinic.org/discussion/someone-to-relate/

One of the best explanations of diagnosing the different neuropathies in an easy to understand way that I have found is by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
https://www.youtube.com/watch?v=3FrQ7Glvgok

He also has a YouTube channel that has a lot of great information if you want to learn more about the conditions - https://www.youtube.com/c/MatthewBJensen

Jump to this post

John -- anyone with PN really should look at this video, great source of information, thanks for posting! Ed

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JK | @contentandwell | Nov 7, 2022
In reply to @laurask "Hi! I truly appreciate your kindness and response. To this day, we still have no idea..." + (show)
@laurask

Hi! I truly appreciate your kindness and response. To this day, we still have no idea what caused my illness. My thiamine level was undetectable which points to malnutrition/chronic alcoholism (I rarely drink) or possibly a genetic mutation of some sort. Duke concluded that it is not a genetic issue. I am on the waiting list of neurology at the Mayo Clinic & praying that we find this missing link. I have had a handful of EMG tests. Due to those results, my prognosis is fair for partial recovery during the next two years. I constantly work with my hands and do everything I can to “wake them up”. My walking and stability has greatly improved as long as I’m wearing tennis shoes. Without them, I am not able to put my ankle to the floor due to tightness in my Achilles tendon. For now, I will work on responding to these messages. Thank you again for reaching out. I wish you all of the best!

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Good Morning, @laurask I just came across this conversation again and it made me wonder how you are doing. Has there been any improvement? I know you said 2 years but have you seen any yet at all? We are all pulling for you. The best of course would be if someone could figure out the cause of your problems but even solving them without knowing the cause would be wonderful.
JK

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judithfraser000 | @judithfraser000 | Apr 3, 2023

Sorry about your pain. I’m 84. I’ve tried many possible healing solutions without luck. I’m now seeing a chiropractor who is using a red light therapy and points the light in between my toes then uses it on my calves. I do feel some tingling in those areas when he’s done. I’ve only had 2 hours of the red light so far but I am hopeful. I also take alpa lipoic acid tablets and B 12. Among other vitamins

Don’t give up.

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annregister | @annregister | May 20, 2023

Welcome @laurask i am also new to this group but everyone here has been very welcoming, helpful, supportive and I am so thankful I found this group. I am so sorry to hear your story. I hope you find answers and relief quickly.

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annregister | @annregister | Jun 26, 2023

I can relate. I have always worked with children in one way or another. For the past 10 years I have been a first grade teacher. Now, I can't walk w/assistance, drive, stand for more than 10 or so minutes, hold a pencil for very long; I don't sleep. I can't think or process information because of the numerous medications I've tried over the years. This disease takes your life. However, I have decided, through much therapy, and soul searching (deep, very deep) i'm not going to let this disease take anything else from me. I was finally diagnosed with Length Dependent - Axonal Sensorimotor Polyneuropathy caused by Diabetes (which I don't have!) and Small Fiber Neuropathy. My symptoms are constant (every day): pain (7-15 daily), burning, throbbing, stabbing, sharp, pins/needles, hot goals, numbness/tingling; hands and feet/ankles moving up legs. I have set a new goal for myself: I can make it through a day or two when the pain is a level 7 or 8 or even a 9, so I going to make the best of those days and hold my grandbaby or go out to eat with my husband or friends. I just know the next few day, I'll be down, but not feeling sorry for myself. I'm not doing that anymore. I've done that long enough. Good Luck in your journey. I'm so sorry for your diagnosis. This is a tough one. I'm always here to listen.

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NJ Ed | @njed | Jun 27, 2023

@annregister I have been diagnoses by Mayo in Rochester with idiopathic axonal sensorimotor PN and I have bi-lateral drop foot as well. I have small and large fiber, not a diabetic. What's odd is that with this, I have no pain which, in my opinion only, could be a clue as to some causes. It started out in about 2008 with pins and needles and in around 2013 got worse, progressed upwards from feet to calf area and is holding in that location for about a year now. Yes, little numbness in fingers. I am really sorry to hear about the pain issues you experience. You're right make the best of the good days and my wife and I spend time with our grandkids....important!! The best to you!!! Ed

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