New to neuropathy, terrified and seeking advice from you guys

Posted by tom01255 @tom01255, Aug 21, 2022

I've had neuropathy in my feet for a couple of years, and the neurologist I consulted has never tracked down the cause. I didn't worry too much because it was just a numbness in my toes. This summer, though, it spread to my hands, up my arms, into my shoulders and into my legs. The neurologist did a biopsy and says that it gave no clue to the cause. He hasn't recommended any treatment, and my condition is worsening daily. I've contacted one university neuropathy clinic and been told that it will be a couple of weeks before they decide whether the doctors there will see me. I can't seem to get any medical personnel to take me seriously.

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

What a burden you carry. My next suggestion was just what you did and reached out to a large treatment center. Hope you find your answers and good luck.

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@tom01255
Seizure medicine side effects often decrease in severity and occasionally disappear after a few weeks to a few months. I don’t remember you saying how long you’ve taken gabapentin. If you’ve been on it for a while we may want to Get a second pick up pay him from another neurologist or change Neurologists. Since more than 100 types of neuropathy have been identified perhaps you have a more aggressive type.
Jake

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There is a thread on connect about supplements that help neuropathy, since there’s no known drug that cures it.

https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/?pg=1#chv4-comment-stream-header

Hope this helps.

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@tom01255

The weakness in my legs is a brand new symptom. Surely there must be some kind of treatment to at least ameliorate the symptoms and perhaps slow the progress of the condition?

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My neuropathy was caused by a (first small, then large) disc herniation. The small “bubble” out, which I ignored, caused numbness between two toes on one foot for several years- then it “blew”, causing very advanced symptoms. The MRI also showed spinal stenosis, which is very well-known to cause leg weakness. I sought care at a major medical center/teaching hospital. You are on the right track. If they refuse you, call the next one. Good luck, my daily neuropathy prayer is “Help me to acknowledge, accept, and choose to work with my disability.” It’s hard, but like Jake says, “It is what it is”.

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@centre

My neuropathy was caused by a (first small, then large) disc herniation. The small “bubble” out, which I ignored, caused numbness between two toes on one foot for several years- then it “blew”, causing very advanced symptoms. The MRI also showed spinal stenosis, which is very well-known to cause leg weakness. I sought care at a major medical center/teaching hospital. You are on the right track. If they refuse you, call the next one. Good luck, my daily neuropathy prayer is “Help me to acknowledge, accept, and choose to work with my disability.” It’s hard, but like Jake says, “It is what it is”.

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The acceptance part is proving a real challenge for me.

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@tom01255

The acceptance part is proving a real challenge for me.

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I’m 4 years in and still working on it😊

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Before my condition hit in 2020 I was at the gym every other day doing the elliptical bike and weight machines. I thought I was in good shape but neuropathy, arthritis, and gammopathy hit. I had P T. Maybe it helped. Perhaps I should ask my physician for another referral to P T.

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@tom01255

The acceptance part is proving a real challenge for me.

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@tom01255 and @centre, You are not alone with the acceptance for neuropathy. A lot of us have been there.

-- Have You Made Any Kind of Peace With Having Your Neuropathy?: https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/

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I'm dealing with the onset of serious peripheral neuropathy. I hope to hear from a university neuromuscular clinic in a day or two about working with its doctors, so I haven't abandoned all hope for the future. Still, I know that my future is most likely going to be one of pain, discomfort, and less. Less activity, less pleasure in the things that used to give me joy such as gardening and long walks with my dog. Less travel and adventures with my wife. Etc. Not surprisingly, this makes me feel bleak. So how do all of you continue to find satisfaction and/or joy in your lives?

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@tom01255

I'm dealing with the onset of serious peripheral neuropathy. I hope to hear from a university neuromuscular clinic in a day or two about working with its doctors, so I haven't abandoned all hope for the future. Still, I know that my future is most likely going to be one of pain, discomfort, and less. Less activity, less pleasure in the things that used to give me joy such as gardening and long walks with my dog. Less travel and adventures with my wife. Etc. Not surprisingly, this makes me feel bleak. So how do all of you continue to find satisfaction and/or joy in your lives?

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I’m so sorry. I’m also dealing with it because a rare autoimmune disease that has, and is continuing to, damage my large nerves. My feet and legs are at times a problem, but I have learned to deal with it. Recently, however the nerves in my head have been causing me scalp pain, facial numbness, and vision problems. That indicates that this autoimmune disease is continuing to damage all of my nerves. I’m waiting for an appointment with Mayo Rheumatologist because my community rheumatologist needs help with my treatment. The drug I need messes with my lungs so I don’t know what they can do.
Please try to stay out of the fear of what you might be losing. You are not there yet, and you may surprise yourself…
All the best

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