1. < Neuropathy

Non-diabetic neuropathy

Posted by mscaroline2014 @mscaroline2014, Jan 20 6:49pm

Before I tell my story, let me state that I was a daily wine drinker for several years. My neuropathy started in my feet in 2017. It did not progress beyond my feet for several years. I stopped drinking in 2023, and at that point, my neuropathy was still confined to my feet. My doctor said that alcohol cessation should stop the progression of the neuropathy. I also started on a weight loss drug at that time. I weighed 157 lbs and I am 5’2”. The medicine was a success. I lost 54 lbs in five months, but also lost a large amount of muscle. I continued on the medication on the advice of my doctor. She said I would need to stay on the meds in order to maintain weight loss. Long story short, I was not hungry and from March, 2023 until February, 2024, I ate nothing but fruit, popcorn and salads. I ate very little protein during that year. Anyway, about six weeks after starting the medication, I noticed my knees felt weak. I spoke to my GP about it, and she said it was not associated with the medication. However, I became weaker and my neuropathy went into hyperdrive. I finally took myself off the medication in February, 2024, started eating a normal diet. I was able to see a neurologist at Vanderbilt and she said my neuropathy was probably caused by several factors, one being alcohol but also rapid weight loss, nutritional deficiencies and possibly idiopathic. That was in October. She also said my neuropathy should slow or cease progression with the modifications I made. However, my neuropathy is getting worse. I now have numbness all the way up my thighs, and, in the last two months, numbness in my rear. I am also developing a twitch on the left side of my face. I feel so discouraged and alone. It feels good to have a group of people that understand.

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fferreira | @fferreira | Jan 25 9:03am

Hi! I write in Portuguese. So, you can translate.
Tenho neuropatia periférica há cerca de 7 meses em pés e tornozelos de ambas as pernas. Após muita idas e vindas de médicos e pesquisas por conta própria, concluí que a neuropatia pode ser em decorrência de uso prolongado de estatina ( Rosuvastatina 10 mg) e/ou neuropatia diabética, embora não seja diabético; tenha apenas resistência insulínica. Estou acompanhando meu caso com medicina integrativa, com uso de ácido alfa lipóico 1200mg, 2 vezes ao dia, após a suspensão do uso de eststina há 3 meses. Segui o protocolo de uma das médicas, com 40 aplicações de procaína injetável diariamente, além de emagrecimento com exercícios físicos. e as dores neuropáticas têm diminuído. Desejo-lhe sucesso no seu tratamento. Qualquer coisa, estou por aqui. Abraço!

REPLY
mrmacabre | @mrmacabre | Jan 30 4:59pm
In reply to @dieterreuther "I was diagnosed with idiopathic axonal polyneuropathy (EMG) and spinal stenosis (MRI). I did have successful..." + (show)
@dieterreuther

I was diagnosed with idiopathic axonal polyneuropathy (EMG) and spinal stenosis (MRI). I did have successful spinal stenosis in 2004, but now it came back. My buttocks hurt all the time when I sit on a chair, on a sofa, in the car, or lay in bed. However, my doctors are very careful to identify the stenosis as the cause of my neuropathy. The neuropathy is mostly in my feet and I luckily can still run with proper management (insoles, pain patches). Recently, I been experiencing more and more tingling in my legs. My gut feeling is that the stenosis is involved, but I don’t really know where to go from here. Back surgery brings its own risks.

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I was diagnosed with Idiopathic Poly Neuropathy a few years ago after seeing several neurologists and 2 neurosurgeons to try to determine the cause of the neuropathy in my feet.
I've had every test done that's out there, and everything came back "normal". An MRI done on my spine did show some spinal stenosis at the bottom of my spine, but it was determined not severe enough to be the cause of the nerve damage.
I'm not diabetic, so my diagnosis is "unknown". Great.
In the decade that I've had to deal with this, my neuropathy is becoming more severe, which makes just walking for any length of time very difficult.

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1 reply
NJ Ed | @njed | Jan 31 5:41am
In reply to @mrmacabre "I was diagnosed with Idiopathic Poly Neuropathy a few years ago after seeing several neurologists and..." + (show)
@mrmacabre

I was diagnosed with Idiopathic Poly Neuropathy a few years ago after seeing several neurologists and 2 neurosurgeons to try to determine the cause of the neuropathy in my feet.
I've had every test done that's out there, and everything came back "normal". An MRI done on my spine did show some spinal stenosis at the bottom of my spine, but it was determined not severe enough to be the cause of the nerve damage.
I'm not diabetic, so my diagnosis is "unknown". Great.
In the decade that I've had to deal with this, my neuropathy is becoming more severe, which makes just walking for any length of time very difficult.

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I also have idiopathic sensory motor PN causing numbness with poor balance with drop foot, yet no pain. However, I do have back issues with a diagnosis similar to yours. I was convinced that the PN was being caused by back issues L3 to S1. Various MRI's have my neurosurgeon and neurologist at Mayo saying yes you have back issues but back is not the cause for PN. Oddly enough, I've shown doctors that if I rub my lower back when walking, the speed in which I walk improves. I get this dumbfounded look and a...hmmm. Tens unit no help. Not a diabetic, only one in the family with PN. Walking any distance is an increasing problem.

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1 reply
marthadean | @marthadean | Jan 31 11:46am

Have you tried physical therapy with a qualified therapist. I am just beginning and have hopes that once my muscles are in better shape, I will be able to get up and down from chairs and get in and out of the car more easily. I'm going to an organization called PT Solutions and I find they are more thorough in their assessment
of existing proglems than other groups I have tried,

REPLY
missbutterfly2be | @missbutterfly2be | Feb 1 11:45am
In reply to @njed "I also have idiopathic sensory motor PN causing numbness with poor balance with drop foot, yet..." + (show)
@njed

I also have idiopathic sensory motor PN causing numbness with poor balance with drop foot, yet no pain. However, I do have back issues with a diagnosis similar to yours. I was convinced that the PN was being caused by back issues L3 to S1. Various MRI's have my neurosurgeon and neurologist at Mayo saying yes you have back issues but back is not the cause for PN. Oddly enough, I've shown doctors that if I rub my lower back when walking, the speed in which I walk improves. I get this dumbfounded look and a...hmmm. Tens unit no help. Not a diabetic, only one in the family with PN. Walking any distance is an increasing problem.

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MY DR.REACTS THE SAME WHEN I TELL HIM THAT WHEN I CUT BACK ON MY PD MEDS MY BALANCE AND LEG PAIN AND NEUROPATHY IS LESS. I GET SO FRUSTRATED.

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1 reply
marthadean | @marthadean | Feb 3 10:25am

Why do you continue any medication if it does not improve your condition. Just tell the doctor that you will not take something. It really is your choice

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NJ Ed | @njed | Feb 4 5:50am
In reply to @missbutterfly2be "MY DR.REACTS THE SAME WHEN I TELL HIM THAT WHEN I CUT BACK ON MY PD..." + (show)
@missbutterfly2be

MY DR.REACTS THE SAME WHEN I TELL HIM THAT WHEN I CUT BACK ON MY PD MEDS MY BALANCE AND LEG PAIN AND NEUROPATHY IS LESS. I GET SO FRUSTRATED.

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@missbutterfly2be - Just goes to show you that the medical community really do not fully understand the complex issues surrounding PN. They can tell us what we have but not the why and to me, that's what makes this so difficult to understand. Years ago, my symptoms of PN matched those of a diabetic. Various doctors insisted on ordering blood work which showed normal levels, and my primary doctor checked levels twice a year until I told her that my wife has type 1 diabetes and on an insulin pump. We would do a blood sugar test at various times, all normal. I just switched to a new primary doctor. First question, are you sure you are not a diabetic?

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2 replies
mrmacabre | @mrmacabre | Feb 4 2:19pm
In reply to @njed "@missbutterfly2be - Just goes to show you that the medical community really do not fully understand..." + (show)
@njed

@missbutterfly2be - Just goes to show you that the medical community really do not fully understand the complex issues surrounding PN. They can tell us what we have but not the why and to me, that's what makes this so difficult to understand. Years ago, my symptoms of PN matched those of a diabetic. Various doctors insisted on ordering blood work which showed normal levels, and my primary doctor checked levels twice a year until I told her that my wife has type 1 diabetes and on an insulin pump. We would do a blood sugar test at various times, all normal. I just switched to a new primary doctor. First question, are you sure you are not a diabetic?

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My doctor checks my bloodwork a couple of times every year, and everything is fine. No problems with my kidneys or liver.

REPLY
1 reply
NJ Ed | @njed | Feb 4 3:14pm
In reply to @mrmacabre "My doctor checks my bloodwork a couple of times every year, and everything is fine. No..." + (show)
@mrmacabre

My doctor checks my bloodwork a couple of times every year, and everything is fine. No problems with my kidneys or liver.

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@mrmacabre Your doctor is on the ball and is great that the doctor is checking your bloodwork a few times a year. Stay well! Ed

REPLY
tlclimo | @tlclimo | Feb 5 7:54am

My foot neuropathy comes from my spine. Might want to check with a doctor of Chiropractic if no diabetes present. Just a thought

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