1. < Neuropathy

Questions to Ask and Treatment Options

Posted by dbchip @dbchip, Dec 19, 2024

I recently moved this past summer and have my first appointment with my new Neurologist at Duke in January. Diagnosed 3 years ago with (CIAP) Chronic Idiopathic Axonal Polyneuropathy. My pain levels have gotten pretty consistent over the past 4-5 months.
Over the past 3 years I have tried the following with no luck:
Gabapentin
Duloxetine
Alpha Lipoic Acid-R
Lidocaine Cream
Pregabalin (still taking)
Acetyl L-Carnitine (still taking)
I did have success with the Pregabalin for about 4 months, but then it stop working.

Anyone have any suggestions on what I should ask when I go to my appointment as far as treatment? They my run the labs again and do another EMG-NCS, but I doubt they will find anything new.

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margesil | @margesil | Dec 21, 2024
In reply to @topsz "I have numbness in my toes and have not been diagnosed. Which Dr should I see?..." + (show)
@topsz

I have numbness in my toes and have not been diagnosed. Which Dr should I see? The numbers want gradual, one day it was just there! It’s a miserable feeling.

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Neurologist would be the one to see. My dumbness was on and off, at the same time had a spot, if touched, had shooting pain. Foot felt like it was in wet sand sometimes. Strange sensations I’ve just gotten used to. Noticed eating sugary things, especially at night, makes it worse.

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topsz | @topsz | Dec 21, 2024
In reply to @margesil "Neurologist would be the one to see. My dumbness was on and off, at the same..." + (show)
@margesil

Neurologist would be the one to see. My dumbness was on and off, at the same time had a spot, if touched, had shooting pain. Foot felt like it was in wet sand sometimes. Strange sensations I’ve just gotten used to. Noticed eating sugary things, especially at night, makes it worse.

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What are you doing for the numbness? I’m off balance with it

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1 reply
margesil | @margesil | Dec 21, 2024
In reply to @topsz "What are you doing for the numbness? I’m off balance with it" + (show)
@topsz

What are you doing for the numbness? I’m off balance with it

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I’m off balance as well…finding walking behind a shopping cart to be at my best. The root of my issues had come from toxic levels of B6. When I recently felt less balanced, I had bloodwork done. Sure enough, B 6 had risen. So I made changes: new multi without it, trying for more exercise ( even going up and down grocery aisles, ) and drinking more water. Aside from that I sometimes put a heating pad on my feet, but must be careful with temp. I use Nervive every night. There doesn’t unfortunately seem to be a magic wand.

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topsz | @topsz | Dec 21, 2024

Thank u for that. Just had my blood levels checked and I was ok with the B. Going to try the Nervive!

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mistyisle44 | @mistyisle44 | Dec 22, 2024
In reply to @margesil "I’m off balance as well…finding walking behind a shopping cart to be at my best. The..." + (show)
@margesil

I’m off balance as well…finding walking behind a shopping cart to be at my best. The root of my issues had come from toxic levels of B6. When I recently felt less balanced, I had bloodwork done. Sure enough, B 6 had risen. So I made changes: new multi without it, trying for more exercise ( even going up and down grocery aisles, ) and drinking more water. Aside from that I sometimes put a heating pad on my feet, but must be careful with temp. I use Nervive every night. There doesn’t unfortunately seem to be a magic wand.

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There is an app called Nymbl which is very helpful in helping with balance. You use your cell phone and you do appropriate exercises, physical and mental (both at the same time) which I feel sure you will manage.

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margesil | @margesil | Dec 22, 2024

Thanks! I will definitely check out that app. I do go to PT once a week and she has me to balance related exercises. I just have to be disciplined, motivated, consistent to spend time at home doing some. It sounds like that app would help. Appreciate the advice! ( a valuable gift for the holidays )

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smn1 | @smn1 | Dec 22, 2024
In reply to @glenner075 "Yes, a neurologist is the best starting point. I also have numbness and tingling in my..." + (show)
@glenner075

Yes, a neurologist is the best starting point. I also have numbness and tingling in my feet. I have had the condition for 15 years. Recently, I have found my hands going numb and aching as I awake in the morning. The question I have is the malady with my hands related to my neuropathy in my feet. Perhaps it is just an extension of the development of my neuropathy, I have taken gabapentin and Cymbalta for many years for anxiety control, perhaps it has improved the neuropathy in my feet without me realizing that was an ancillary benefit.

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glennar075 You don't happen to sleep with your hand under your head do you. I only ask as I can't seem not to and my other hand crunched up to my chest. And wake sometimes with numbness an pain from that. U could also potentially have developed a little stenosis or something in your cervical spine causing it. As I have that going on as well, A CT scan could possibly assist in identifying that...

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