Idiopathic Progressive Polyneuropathy: How to find a specialist?

Hello,
My name is Todd. Ive been reading posts on this forum for the past 2 years but have never actually posted anything. I have fast (by my standards) progressing idiopathic poly neuropathy. The tingling burning sensation in my hands, feet, arms (to my elbows) and legs (now to my hips) is impossible to ignore most of the day.
I guess what I'm asking you is, what questions should I be asking? I have seen 3 neurologists with no good answers, and the 600mg Gabapentin and 60mg of nortriptyline daily, do nothing.
I would love to find a route cause, and if not, at least a way to slow the progression down and curb the pain.
Please ask me questions as I'm looking for direction and feel like I'm just flailing and a bit on my own.

Todd

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Hello,
My name is Todd. Ive been reading posts on this forum for the past 2 years but have never actually posted anything. I have fast (by my standards) progressing idiopathic poly neuropathy. The tingling burning sensation in my hands, feet, arms (to my elbows) and legs (now to my hips) is impossible to ignore most of the day.
I guess what I'm asking you is, what questions should I be asking? I have seen 3 neurologists with no good answers, and the 600mg Gabapentin and 60mg of nortriptyline daily, do nothing.
I would love to find a route cause, and if not, at least a way to slow the progression down and curb the pain.
Please ask me questions as I'm looking for direction and feel like I'm just flailing and a bit on my own.

Todd

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I am in the same boat except not as severe (yet). My neuropathy started in May 2019 (all of a sudden), is in my feet only, and is numbness only - very numb but no pain (yet).

The word "idiopathic" drives me crazy. I am an engineer by training, and if a bridge fell down you would not say it was "idiopathic", you would find the cause. Yes, medicine is different, but they use the word as though it's an explanation, and it's not.

I have a virtual appointment with Dr. Anne Louise Oaklander at MGH in April. It took a while to get that. https://neuropathycommons.org/experts/anne-louise-oaklander-md-phd

I think she is quite an expert, so hoping.... will report back.

In meantime I am trying a keto diet to see if that helps. My blood sugar is within range but on the high end of normal, and some say that even slightly high sugar (and/or insulin levels) can cause neuropathy. It may actually be the insulin that is the problem, not the sugar (some need higher insulin levels to control sugar).

I am also suspect of the fact that I was put in a statin a year before my neuropathy started. I stopped the statin when neuropathy started (my cardiologist said I did not need it), but neuropathy has worsened, so not sure whether statin was a factor or not.

I have low B12 but have taken shots for that for years, and B12 blood tests are normal. I've taken B vitamins, alpha and R lipioc acid, magnesium, etc. Nothing works so far.

There is WAY too little research done in so many areas in medicine. If all the $$$ are taken up in cancer research and more serious things like that, then I get it, but man, we still know so little about so much.

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I just want to express my sympathy. Just curious what your A1C is? Doctor at Hopkins feels that neuropathy can occur with A1C as low as 5,7 and the best way to reduce along w diet is exercise. Statins are overused and can cause neuropathy. Oaklander is an expert but care in most areas for researching cause is terrible. We are spending too much money on our defense budget and now is approaching a trillion = to next ten countries combined including Russia and China. Plus we are the only developed country in the world that has a for profit system leaving the development of drugs up to the drug companies. Didn't mean to get on my "soapbox" but our politicians are taking too much money from Big Pharma and their motive is profit. I hope Oaklander can shed light on what is going on.

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Hi Todd, I'm John. I echo what some others here have said. First, I had to gradually have my primary doc raise my gabapentin dosage to 3600 daily during the day. That finally cut my feet pain in about half. Recently I have been trying CBD topical on my feet at 8 pm so which cut down my gabapentin use by 25% and my evening pain is now gone. Consider these and best of luck man. Johnmacc

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I am in the same boat except not as severe (yet). My neuropathy started in May 2019 (all of a sudden), is in my feet only, and is numbness only - very numb but no pain (yet).

The word "idiopathic" drives me crazy. I am an engineer by training, and if a bridge fell down you would not say it was "idiopathic", you would find the cause. Yes, medicine is different, but they use the word as though it's an explanation, and it's not.

I have a virtual appointment with Dr. Anne Louise Oaklander at MGH in April. It took a while to get that. https://neuropathycommons.org/experts/anne-louise-oaklander-md-phd

I think she is quite an expert, so hoping.... will report back.

In meantime I am trying a keto diet to see if that helps. My blood sugar is within range but on the high end of normal, and some say that even slightly high sugar (and/or insulin levels) can cause neuropathy. It may actually be the insulin that is the problem, not the sugar (some need higher insulin levels to control sugar).

I am also suspect of the fact that I was put in a statin a year before my neuropathy started. I stopped the statin when neuropathy started (my cardiologist said I did not need it), but neuropathy has worsened, so not sure whether statin was a factor or not.

I have low B12 but have taken shots for that for years, and B12 blood tests are normal. I've taken B vitamins, alpha and R lipioc acid, magnesium, etc. Nothing works so far.

There is WAY too little research done in so many areas in medicine. If all the $$$ are taken up in cancer research and more serious things like that, then I get it, but man, we still know so little about so much.

Jump to this post

I am in the same boat except not as severe (yet). My neuropathy started in May 2019 (all of a sudden), is in my feet only, and is numbness only - very numb but no pain (yet).

The word "idiopathic" drives me crazy. I am an engineer by training, and if a bridge fell down you would not say it was "idiopathic", you would find the cause. Yes, medicine is different, but they use the word as though it's an explanation, and it's not.

I have a virtual appointment with Dr. Anne Louise Oaklander at MGH in April. It took a while to get that. https://neuropathycommons.org/experts/anne-louise-oaklander-md-phd

I think she is quite an expert, so hoping.... will report back.

In meantime I am trying a keto diet to see if that helps. My blood sugar is within range but on the high end of normal, and some say that even slightly high sugar (and/or insulin levels) can cause neuropathy. It may actually be the insulin that is the problem, not the sugar (some need higher insulin levels to control sugar).

I am also suspect of the fact that I was put in a statin a year before my neuropathy started. I stopped the statin when neuropathy started (my cardiologist said I did not need it), but neuropathy has worsened, so not sure whether statin was a factor or not.

I have low B12 but have taken shots for that for years, and B12 blood tests are normal. I've taken B vitamins, alpha and R lipioc acid, magnesium, etc. Nothing works so far.

There is WAY too little research done in so many areas in medicine. If all the $$$ are taken up in cancer research and more serious things like that, then I get it, but man, we still know so little about so much.

Jump to this post