← Return to Axonal Sensorimotor Polyneuropathy: Looking for someone to relate

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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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Replies to "Hi! I truly appreciate your kindness and response. To this day, we still have no idea..."

@laurask you seem to be doing everything humanly possible. I hope and pray that you get some positive results. I have a daughter named Laura and hearing what you have gone through makes me think how concerned I would be for her if she had these problems. No parent ever wants to see their child, whether a young child or an adult, having problems such as these.
JK

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