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Alcohol Induced Neuropathy Part 2

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Old 09-13-2019, 05:27 AM   #451
On_A_Freeway
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That's good to know about the 5 year window. I was told something along those lines. That I could see improvements, anywhere from 1-3 years, or maybe even 5.

Early on when I was counting days, my head was still telling me that maybe I could have a drink one day again. And I would say well maybe this goes away and I can have one here or there. I would know it was a ridiculous thought and I didnt want to really act on it. But it was there. The good news is the more I lived with this pain, the more I started to see how alcohol was such a poison and to open that door again now seems crazy.

Since I've changed my diet, the way that I look at food has also changed. I know it takes a long time but the fact that people develop neuropathy because of their diet leading them to diabetes is just frightening. I am on other forums and I read about peoples struggles and its crazy to me that we have gotten to this place where there is so much disease in our culture as a result of what people think is OK to put in their bodies.

The only reason that I see this now is because I had to change because of what I'm dealing with. Otherwise, I would have continued to eat a ton of sugar, and most likely would have not made the strides I have with exercise.

Last edited by On_A_Freeway; 09-14-2019 at 04:44 AM.
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Old 09-13-2019, 01:19 PM   #452
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There was a great scene in The West Wing, where Leo, the (recovering alcoholic) Chief of Staff, when asked if he never wants a drink again, said: “I don’t want “a drink”, I want loads of them.”*

I knew this from the first day I got sober. I never entertained the thought, and I think I spared myself a lot of hassle that way.

* I remembered it half right . The full quote:

Quote:
I'm an alcoholic. I don't have one drink. [pauses] I don't understand people who have one drink. I don't understand people who leave half a glass of wine on the table. I don't understand people who say they've had enough. How can you have enough of feeling like this? How can you not want to feel like this longer? [pauses, sighs] My brain works differently.
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Old 09-17-2019, 07:36 PM   #453
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It has been one week now since I embarked on this journey. I have been on the supplements listed for 4 days now. I have not had a drink now in over one week (incredibly hard). Here is the status:
* Lightheadedness has improved every day...barely noticeable today
* Hands have improved...barely noticeable tingling today
* Skin crawling feeling on left ankle milder today
* Numbness in lips seems to have gone away
* Tingling in feet is about the same
* New symptom has been a the feeling of a hot pad on my left hip several times a day.
* I have had Heineken 0.0 two nights this last week (3 of them per night). It has helped allot as it has a great beer taste that I love.
The next week begins....
Hello friends...Update as of 9/17 is mixed. Hands and feet are about the same and the "hot pad" feeling on my hip has gone away. BUT...my lightheadedness is MUCH worse now..I have it all the time and if it progresses further I could be in tough shape! Also, The numbness in my lips has gotten worse and has expanded to more of my face. Also I have a bit of tingling higher in my arms and legs now. So after a month there is still progression. Did any of you have the lingering lightheadedness and the face numbness? Thanks for the help!!!
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Old 09-17-2019, 10:29 PM   #454
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Hello friends...Update as of 9/17 is mixed. Hands and feet are about the same and the "hot pad" feeling on my hip has gone away. BUT...my lightheadedness is MUCH worse now..I have it all the time and if it progresses further I could be in tough shape! Also, The numbness in my lips has gotten worse and has expanded to more of my face. Also I have a bit of tingling higher in my arms and legs now. So after a month there is still progression. Did any of you have the lingering lightheadedness and the face numbness? Thanks for the help!!!
I wonder if the dizziness is related to Cerebellar Ataxia...are your guys familiar witht that? I think it is some form of alcohol damage to the Cerebellum. Seems to be worsening without the drinking so not sure.
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Old 09-19-2019, 06:55 PM   #455
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I thought I was dizzy and all that because of the gabapentin, but I was reading today on a FB support group that the disease itself can cause it.
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Old 09-19-2019, 09:42 PM   #456
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I thought I was dizzy and all that because of the gabapentin, but I was reading today on a FB support group that the disease itself can cause it.
Hi there...I think I was on that support group as well and was the one questioning about it. I actually went to my Neurologist today and they said the dizziness is not typically a manifestatiuon and when it is that is one thing that typically does not last. Also the neurologist spent some more time to go over my EMG and said I have mild Axonial and Demylenating polyneuropothy, but the muscles were not effected. Not sure what all that means...he did say once the Axions are affected recovery was not typical but that progession could be slowed. Anyone have a POV on that and my diagnosis? Thanks!
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Old 09-24-2019, 04:26 AM   #457
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Over the years I have seen it reported several times in the PN forum that the face can be involved too - in fact, any part of the body. I have not heard about getting dizzy, but that doesn't mean nothing.


Most of the time it's legs/arms because they are the extremities, but PN can manifest all over the body - at least that's what I concluded from reading the PN forum for over 5 years.
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Old 09-24-2019, 06:31 AM   #458
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Over the years I have seen it reported several times in the PN forum that the face can be involved too - in fact, any part of the body. I have not heard about getting dizzy, but that doesn't mean nothing.


Most of the time it's legs/arms because they are the extremities, but PN can manifest all over the body - at least that's what I concluded from reading the PN forum for over 5 years.
Thanks! Really appreciate it. I think the most concerning thing the physicians assistant said was that once the Axons were affected there would be no recovery and progression would continue. Any point of view on that? I have read that with the alcohol induced neuropathy there is typically not progression if drinking stops and there can be recovery? Thanks for the help!
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Old 09-25-2019, 05:45 PM   #459
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It's interesting hearing how specific some neuro's get with patients. I see a Dr at The Peripheral Neuropathy Center at New York-Presbyterian hospital which is pretty well known and I really dont get much info at all when I see him. He basically tells me I did a number on myself, and not to drink, and offers meds. I have asked about diet and pain management and again he will write a reference.

Very little bedside manner at all. I took it upon myself to see a Dr with a small practice and he offered a lot more info. The jist of it has been that taking the alcohol out of the picture could result in improvement and I read that often. But it comes with a caveat that it could be permanent. So I choose not to get my hopes up and just be happy I can function the way i can. I also choose to live a lifestyle with diet and exercise. Figure it ups my chances of being able to stay on my feet as I age. I might give a plant based diet a go for 3 months to see if that helps, that's kind of the next thing on my radar.
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Old 09-29-2019, 03:29 PM   #460
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Originally Posted by On_A_Freeway View Post
It's interesting hearing how specific some neuro's get with patients. I see a Dr at The Peripheral Neuropathy Center at New York-Presbyterian hospital which is pretty well known and I really dont get much info at all when I see him. He basically tells me I did a number on myself, and not to drink, and offers meds. I have asked about diet and pain management and again he will write a reference.

Very little bedside manner at all. I took it upon myself to see a Dr with a small practice and he offered a lot more info. The jist of it has been that taking the alcohol out of the picture could result in improvement and I read that often. But it comes with a caveat that it could be permanent. So I choose not to get my hopes up and just be happy I can function the way i can. I also choose to live a lifestyle with diet and exercise. Figure it ups my chances of being able to stay on my feet as I age. I might give a plant based diet a go for 3 months to see if that helps, that's kind of the next thing on my radar.
Freeway...have you tried the Weill Cornell PN center in NYC? I have an appointment with them in late October. It appears as if the docs there only specialize in PN
Peripheral Neuropathy Doctors New York | Weill Cornell Neuropathy Center
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