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.

@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.

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

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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.

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@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.

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

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

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@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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