Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

Haven't posted here for a bit, but just had a development and wanted to share the news and ask questions. Several years ago a sensation on the ball of my foot began spreading, and this year it's above my knee. I thought it was a pinched nerve, but when I saw a neurologist it was "idiopathic peripheral polyneuropathy." Family doctor agreed and prescribed an antidepressant. Blah blah blah, finally had an EMG and my nerves are intact and fully functional. I do not have neuropathy, but am being sent for investigation of my spine to see if it's causing my symptoms. If that fails, they investigate my brain. Does anybody have any idea of what tests I'm likely to have, and what they may be looking for? And if it's brain or spine, is it likely treatable? I'm trying to decide if I should be celebrating.

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I have non diabetic PN but hopefully closer to diagnosis. My glucose and AC1/levels are just below pre diabetes levels so I have a suspicion they might be the culprits. I am going to eliminate as much sugar as possible to see if it makes a difference. I learned about my PN in May and hope to have a diagnosis in September. The loss of freedom to walk and do things like I used to still has me freaked out. How are you doing with it?

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@misu

Haven't posted here for a bit, but just had a development and wanted to share the news and ask questions. Several years ago a sensation on the ball of my foot began spreading, and this year it's above my knee. I thought it was a pinched nerve, but when I saw a neurologist it was "idiopathic peripheral polyneuropathy." Family doctor agreed and prescribed an antidepressant. Blah blah blah, finally had an EMG and my nerves are intact and fully functional. I do not have neuropathy, but am being sent for investigation of my spine to see if it's causing my symptoms. If that fails, they investigate my brain. Does anybody have any idea of what tests I'm likely to have, and what they may be looking for? And if it's brain or spine, is it likely treatable? I'm trying to decide if I should be celebrating.

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Hi @misu, I'm guessing they may schedule an X-ray or MRI if the doctor suspects spinal nerve compression. Here's some information on the different tests:

--- 6 Tests Used to Diagnose Spinal Stenosis: https://www.verywellhealth.com/tests-used-to-diagnose-spinal-stenosis-2549375

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@misu

Haven't posted here for a bit, but just had a development and wanted to share the news and ask questions. Several years ago a sensation on the ball of my foot began spreading, and this year it's above my knee. I thought it was a pinched nerve, but when I saw a neurologist it was "idiopathic peripheral polyneuropathy." Family doctor agreed and prescribed an antidepressant. Blah blah blah, finally had an EMG and my nerves are intact and fully functional. I do not have neuropathy, but am being sent for investigation of my spine to see if it's causing my symptoms. If that fails, they investigate my brain. Does anybody have any idea of what tests I'm likely to have, and what they may be looking for? And if it's brain or spine, is it likely treatable? I'm trying to decide if I should be celebrating.

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I found out I have L4 L5. Problem

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@1942marilyne

I found out I have L4 L5. Problem

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What were your symptoms? I find it very counterintuitive that a nerve compression at that level would manifest in one foot, then climb my leg before starting in the other foot. Groping for a way to understand this.

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@johnbishop

Hi @misu, I'm guessing they may schedule an X-ray or MRI if the doctor suspects spinal nerve compression. Here's some information on the different tests:

--- 6 Tests Used to Diagnose Spinal Stenosis: https://www.verywellhealth.com/tests-used-to-diagnose-spinal-stenosis-2549375

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Thank you, John, looks like a good source, and took me to others as well. Lots to read!

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@paul14

I have non diabetic PN but hopefully closer to diagnosis. My glucose and AC1/levels are just below pre diabetes levels so I have a suspicion they might be the culprits. I am going to eliminate as much sugar as possible to see if it makes a difference. I learned about my PN in May and hope to have a diagnosis in September. The loss of freedom to walk and do things like I used to still has me freaked out. How are you doing with it?

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From what little I've heard, there are three known causes of neuropathy -- chemo stands out as the vicious one. Alcohol has to be consumed at abusive levels for extended periods, and pre- or even early diabetes is a long way from inducing nerve damage. If you already have neuropathy, it hardly seems reasonable to blame diabetes you don't even have yet. I believe you could benefit from another opinion regarding the causality. For myself, I am hoping against hope that my future includes knee surgery and a life afterward with joy in it.

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@misu

From what little I've heard, there are three known causes of neuropathy -- chemo stands out as the vicious one. Alcohol has to be consumed at abusive levels for extended periods, and pre- or even early diabetes is a long way from inducing nerve damage. If you already have neuropathy, it hardly seems reasonable to blame diabetes you don't even have yet. I believe you could benefit from another opinion regarding the causality. For myself, I am hoping against hope that my future includes knee surgery and a life afterward with joy in it.

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@misu I have peripheral neuropathy. There are more than 3 causes of PN.
My nerves were damaged by Vasculitis. The blood flow to my nerves was restricted by inflammation in my arteries.

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@SusanEllen66

@misu I have peripheral neuropathy. There are more than 3 causes of PN.
My nerves were damaged by Vasculitis. The blood flow to my nerves was restricted by inflammation in my arteries.

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Sorry, I was rushing and should have said "three major causes." Nerve damage can happen from countless things, of course, as you know far better than most.

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@misu

Haven't posted here for a bit, but just had a development and wanted to share the news and ask questions. Several years ago a sensation on the ball of my foot began spreading, and this year it's above my knee. I thought it was a pinched nerve, but when I saw a neurologist it was "idiopathic peripheral polyneuropathy." Family doctor agreed and prescribed an antidepressant. Blah blah blah, finally had an EMG and my nerves are intact and fully functional. I do not have neuropathy, but am being sent for investigation of my spine to see if it's causing my symptoms. If that fails, they investigate my brain. Does anybody have any idea of what tests I'm likely to have, and what they may be looking for? And if it's brain or spine, is it likely treatable? I'm trying to decide if I should be celebrating.

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I am no expert and someone may correct me but I think you can have small fiber peripheral neuropathy and still have normal EMG. a nerve biopsy is what diagnoses small fiber nerve damage. I believe EMG diagnosis large fiber PN.

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