Neuropathy and ALS.

Posted by arkansaslady @arkansaslady, Nov 6 9:38am

I have neuropathy. Recently my 62 year old daughter was diagnosed with ALS. I was struck by the similarity of symptoms the two share. So I asked Google if there was a connection between neuropathy and ALS, and the answer came back "yes." Evidently two recent research studies verified the connection. Has anyone on this site heard anything about this?
Ellen Chamberlain

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

Hi Ellen, There are quite a few comments by members on neuropathy and ALS. Not being a doctor I think that there are a lot of different conditions that have similar symptoms. Here's a search link to the comments on neuropathy and ALS - https://connect.mayoclinic.org/search/comments/?search=%20Neuropathy%20and%20ALS.

Not sure if these are the references you mentioned but here are a couple.
-- The link between ALS and nerve injuries: https://www.medicalnewstoday.com/articles/als-symptoms-and-nerve-injuries
-- Sensory neuropathy in amyotrophic lateral sclerosis: https://pmc.ncbi.nlm.nih.gov/articles/PMC10632209/

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I was told by my neurologist that ALS is about weakness not numbness. I have read where there are similarities for some. I was tested for ALS about 10 months ago and had a clean EMG, but my nerve conduction test showed some slow velocities on my right side. I was given the useless diagnosis of mild sensory axonal polyneuropathy. I’m 56, so the right age, and I have played a lot of baseball which also puts me at a higher risk due to repetitive motions that seem to damage the same nerves over and over. However, my strength has never really totally left me. I have read stories of ALS patients who couldn’t keep their arm up when lifted by the doctor. ALS seems to work pretty fast as far as losing one’s strength. I like many others didn’t totally belive my doctor when he smirked and dismissed my ALS worries, but the longer I go without losing strength, the better I feel about my future. I still am dealing with neuropathy in my feet, and a few other weird symptoms including fatigue that comes and goes, and brain fog with it.
I have an appointment next week to see if my neurologist can look at the possibility of some kind of vagus nerve impingement in my neck, and I have an appointment inna couple of months for thoracic outlet syndrome testing which is a common basball player diagnosis.
Unfortunately, our medical professionals have a long way to go with the central nervous system. ALS is very tough to identify as is many neurological disorders. Keep reading those studies. It’s what lead me to vagus nerve compression and thoracic outlet syndrome as a possibility. Most doctors never consider these rare afflictions. Also look up the relationship between spinal stenosis or cmpression and neuropathy. Most doctors disregard that as a possibility too. Good luck, I hope you find some answers. I still haven’t.

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@closer0043

I was told by my neurologist that ALS is about weakness not numbness. I have read where there are similarities for some. I was tested for ALS about 10 months ago and had a clean EMG, but my nerve conduction test showed some slow velocities on my right side. I was given the useless diagnosis of mild sensory axonal polyneuropathy. I’m 56, so the right age, and I have played a lot of baseball which also puts me at a higher risk due to repetitive motions that seem to damage the same nerves over and over. However, my strength has never really totally left me. I have read stories of ALS patients who couldn’t keep their arm up when lifted by the doctor. ALS seems to work pretty fast as far as losing one’s strength. I like many others didn’t totally belive my doctor when he smirked and dismissed my ALS worries, but the longer I go without losing strength, the better I feel about my future. I still am dealing with neuropathy in my feet, and a few other weird symptoms including fatigue that comes and goes, and brain fog with it.
I have an appointment next week to see if my neurologist can look at the possibility of some kind of vagus nerve impingement in my neck, and I have an appointment inna couple of months for thoracic outlet syndrome testing which is a common basball player diagnosis.
Unfortunately, our medical professionals have a long way to go with the central nervous system. ALS is very tough to identify as is many neurological disorders. Keep reading those studies. It’s what lead me to vagus nerve compression and thoracic outlet syndrome as a possibility. Most doctors never consider these rare afflictions. Also look up the relationship between spinal stenosis or cmpression and neuropathy. Most doctors disregard that as a possibility too. Good luck, I hope you find some answers. I still haven’t.

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I like your post. I saw my first neurologist about the same thing. He also told me ALS is weakness, not numbness. I had various tests and ALS was ruled out. I did buy what he said, because I visited ALS sites and read what they had experienced and it wasn’t like mine.

I am intrigued by the vagus nerve compression as well as spinal cord ideas. I intend to ask my current neurologist about it.

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@johnbishop

Hi Ellen, There are quite a few comments by members on neuropathy and ALS. Not being a doctor I think that there are a lot of different conditions that have similar symptoms. Here's a search link to the comments on neuropathy and ALS - https://connect.mayoclinic.org/search/comments/?search=%20Neuropathy%20and%20ALS.

Not sure if these are the references you mentioned but here are a couple.
-- The link between ALS and nerve injuries: https://www.medicalnewstoday.com/articles/als-symptoms-and-nerve-injuries
-- Sensory neuropathy in amyotrophic lateral sclerosis: https://pmc.ncbi.nlm.nih.gov/articles/PMC10632209/

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Thank you, John. I think you cited one of the studies I had found. What stands out to me is the fact that this is an area that needs more attention and most likely additional study.

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Having idiopathic axonal sensory motor PN, I can say there is a difference. About 6 years ago, I saw this firsthand with an employee who developed ALS at 70 years old and to be honest, I hope I never see it again. It is a horrible disease. Similar symptoms, perhaps, not all ... but in my opinion, the outcome is drastically different.

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Your words scare me. I see what ALS is doing to my daughter, and I fear for her.

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@arkansaslady

Your words scare me. I see what ALS is doing to my daughter, and I fear for her.

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Your concern is understandable. Do you mind saying how she was diagnosed?

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A doctor in Hot Springs, AR. We are seeking a second opinion at the ALS Clinic of the MidSouth, in Memphis, TN.

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