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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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!

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@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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