New to neuropathy, terrified and seeking advice from you guys

Posted by tom01255 @tom01255, Aug 21 7:25pm

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 group.

Hello @tom01255, Welcome to Connect. It can be a little scary to have a skin punch biopsy and have a neurologist tell you that it gave you no clue to the cause. You are not alone. Many of us have idiopathic small fiber neuropathy and it can be difficult to pin a specific cause when there are so many. I have not had a skin punch biopsy but did have a nerve conduction test along with physical exam. My neurologist thinks mine is mostly likely genetic but doesn't really know. I think what might be helpful for you is to learn as much as you can about your condition and possible treatments available. Two sites that really helped me learn more were:
— Neuropathy Commons: https://neuropathycommons.org/
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Here are a couple of discussions that you may want to scan through to see if some of your symptoms match:
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
— Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

You mentioned it started in the toes and now has spread to the arms and hands. Do you have pain or is it just numbness and some tingling?

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@johnbishop

Hello @tom01255, Welcome to Connect. It can be a little scary to have a skin punch biopsy and have a neurologist tell you that it gave you no clue to the cause. You are not alone. Many of us have idiopathic small fiber neuropathy and it can be difficult to pin a specific cause when there are so many. I have not had a skin punch biopsy but did have a nerve conduction test along with physical exam. My neurologist thinks mine is mostly likely genetic but doesn't really know. I think what might be helpful for you is to learn as much as you can about your condition and possible treatments available. Two sites that really helped me learn more were:
— Neuropathy Commons: https://neuropathycommons.org/
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Here are a couple of discussions that you may want to scan through to see if some of your symptoms match:
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
— Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

You mentioned it started in the toes and now has spread to the arms and hands. Do you have pain or is it just numbness and some tingling?

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Thank you for all the great information! I will check out those links. I have tingling and pain. This afternoon I took the dog for a brisk 2-mile walk, and afterward felt very tired and weak in my legs. I'm really worried about ending up disabled.

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@tom01255
Neuropathy can cause weakness in your legs.
Is this a new symptom that wasn’t there the last previous time you walked?
I’ve had neuropathy for 35 years. My Peripheral neuropathy started in the bottoms of my feet with all the burning, stinging, throbbing, stabbing and all the other sensations associated with it. Now I only have numbness from my feet up to my waist causing, falling, walking issues and ED.
No one promised us that life was going to be easy so don’t worry about it and just accept it. Like they say “It is what it is”
Jake

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@jakedduck1

@tom01255
Neuropathy can cause weakness in your legs.
Is this a new symptom that wasn’t there the last previous time you walked?
I’ve had neuropathy for 35 years. My Peripheral neuropathy started in the bottoms of my feet with all the burning, stinging, throbbing, stabbing and all the other sensations associated with it. Now I only have numbness from my feet up to my waist causing, falling, walking issues and ED.
No one promised us that life was going to be easy so don’t worry about it and just accept it. Like they say “It is what it is”
Jake

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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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So sorry. Do you take R-ALA? Please read this. https://www.salubrainous.com/ala-for-neuropathy/

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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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@tom01255 I take most of the supplements listed on page 5 & 6 of this document from the Foundation for Peripheral Neuropathy — https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

I don't think supplements alone are the answer and I've had to make a lot of lifestyle changes to go along with the supplements. I do feel like it's helped slow or possibly stopped the progression of my small fiber PN. I posted my story in another discussion here – Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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@tom01255

Thank you for all the great information! I will check out those links. I have tingling and pain. This afternoon I took the dog for a brisk 2-mile walk, and afterward felt very tired and weak in my legs. I'm really worried about ending up disabled.

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These symptoms in your legs especially after a long walk sounds like vein claudication that compression stockings work well for. You don’t say whether you had any other conditions that might effect this too, i.e. diabetes, night blood pressure, history DVT? You said you had the toe numbness for many years and ignored it until now so I wonder what was going on all these years to cause this?

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I thought I was healthy at 72. In 2020 I developed intense pain in my legs. The result is now I use a walker because of my not being stable. The U of M neurologist has recently doubled my prescription for pregabalin. It seems I am weaker and more unstable. The medication does help with the pain and gives me sleep.

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@leroyj3

I thought I was healthy at 72. In 2020 I developed intense pain in my legs. The result is now I use a walker because of my not being stable. The U of M neurologist has recently doubled my prescription for pregabalin. It seems I am weaker and more unstable. The medication does help with the pain and gives me sleep.

Jump to this post

Welcome @leroyj3, It's good that the medication helps with the pain and lets you get some sleep at night. Are you able to do any exercises to help with your balance?

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@jenatsky

These symptoms in your legs especially after a long walk sounds like vein claudication that compression stockings work well for. You don’t say whether you had any other conditions that might effect this too, i.e. diabetes, night blood pressure, history DVT? You said you had the toe numbness for many years and ignored it until now so I wonder what was going on all these years to cause this?

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I badly need more information. The local neurologist whom I have been seeing did a test to establish that I had neuropathy in my toes two years ago, then jumped to the conclusion that the cause was probably exposure to pesticides as a result of my career as a horticulturist. I did have considerable exposure when I was starting out almost 50 years ago, but soon became more careful, and have had minimal exposure in recent years. Still, I thought this could be the cause and don't have other conditions such as diabetes or anything else that would explain the neuropathy. I don't smoke and have been a moderate drinker (a glass of wine in the evening with my wife, and recently I stopped that). Anyway, I wasn't particularly worried as I know several men my age with neuropathy in their feet for whom it is no big deal. When my condition got much worse this summer, the neurologist took a biopsy, but says that didn't provide any clues to the underlying cause. He has moved at a glacial pace, and doesn't seem to care much. Last time I spoke to him, he referred to my "discomfort." In fact, this threatens to disable me, it's not a pebble in my shoe or a mosquito bite.. This morning I got in touch with a neuromuscular clinic at Yale University Health that specializes in the treatment of neuropathy. The receptionist there said I should hear in 48-72 hours about making an appointment to meet with their doctors. I'm hoping they will be more responsive and aggressive in treating my condition. The combination of declining health while the doctor stalled has been harrowing.

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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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