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Alcohol Induced Neuropathy Part 2

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Old 09-04-2019, 12:41 AM   #441
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Well done and glad you enjoyed the camping trip .
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Old 09-04-2019, 06:01 AM   #442
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You're running for President!
If I was a Citizen I would consider it
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Old 09-07-2019, 05:53 AM   #443
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Agreed! But, for me, the fear of that one drink turning me back into what I was is enough to keep me sober.

I have 100X more life now than I did 8 years ago and I would never tempt myself with the drink on purpose..

Just my $.02
Safe to say I feel the same way. It took me a good 6 months away from alcohol, and a lot of work on myself before I started to see what the possibilities were with a life without it.

It would have been difficult for me to be talked out of going back to drinking after I found out about my neuropathy, but I sure wish I did listen to the message I was being told. I would take any improvement to my current situation if I could get it. Now my pain might always be as painful, and I might never gain my strength back, and I might always have to rely on medication because of it.

That additional damage is most likely not reversible, and from a long term perspective, is resulting in a decreased quality of life. The idea of a few drinks here and there, which could alone make it worse, as well as adding the risk of going back to old habits, is not the direction I can afford to go in.

But that's not something I could come to terms with while I was also fighting not to drink on a daily basis. My mind was too caught up in it all. I personally needed to take a step back and get my hands around not drinking, before I could really understand the situation I was in.

I always used to think about the fact that I wouldn't be able to enjoy that glass of wine in Italy or Spain, or that Guinness in Ireland. That made the idea of not drinking so difficult. In the end all I had to do was not drink just in the day that I was in, and rinse and repeat. Eventually my outlook on it completely shifted. That took time though.
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Old 09-11-2019, 06:38 AM   #444
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So I am supposed to see the neurologist next week. Unfortunately I just got hit with shingles, so the burning and tingling on that side of my body is no fun.

I had a question, the EMG test or nerve conduction test can diagnose the neuropathy correct? So the Dr will be able to tell me if I have it, and to what extent based on these tests?

Lastly, are the test painful at all? Not a huge fan of needles......

Just trying to prepare mentally for my appointment.
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Old 09-11-2019, 10:05 AM   #445
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Answer is “it depends” I’m afraid. They can measure signal delays on larger nerves, but have no real way to measure the smaller peripheral ones - that is done through biopsy (and not always 100% conclusive either).

In my case the results were 100% conclusive and enough for me to be determined “disabled” without any further questions.

Needles sting a bit but can’t remember any real pain from them.

Disclaimer: my info/experience is 6 years old, so there may have been improvements I’m not aware of.
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Old 09-11-2019, 10:54 AM   #446
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Answer is “it depends” I’m afraid. They can measure signal delays on larger nerves, but have no real way to measure the smaller peripheral ones - that is done through biopsy (and not always 100% conclusive either).

In my case the results were 100% conclusive and enough for me to be determined “disabled” without any further questions.

Needles sting a bit but can’t remember any real pain from them.

Disclaimer: my info/experience is 6 years old, so there may have been improvements I’m not aware of.
Thanks so much for your response. I am new to the forum, but what exactly were your symptoms? You put "disabled" in quotes, does that mean you were generally functional and every day life activities, but these tests determined you were "disabled" or were your symptoms more severe?
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Old 09-12-2019, 02:05 AM   #447
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Thanks so much for your response. I am new to the forum, but what exactly were your symptoms? You put "disabled" in quotes, does that mean you were generally functional and every day life activities, but these tests determined you were "disabled" or were your symptoms more severe?
Well, you asked!

The quotes are because some of the time I'm feeling quite good, and the more I manage my diet and my stress levels, the longer those periods last. But I started out with severe burning, stabbing, feeling like walking on crushed glass, feeling like both feet were broken, someone cutting my soles with a box cutter, and, from time to time, cramps in my toes that make my left foot look like it is going solo and wants a life of its own, big toe bending outwards like it is going to snap off. I can not really "feel" my toes, but when I do it feels like they are encased in cement. I also feel like I just walked 50 miles in bad shoes.

The EMG showed that apart from the suspected PN I also damaged my sural nerves starting a few inches under my knees. (which is part of the poly-neuropathy diagnosis)

The good periods make me feel I should go back to work (I had my own company), the bad ones make it clear I'm not up to it - not even close. I feel a lot better than when I started out, no doubt about it, but that progress stops at some point, which is typical for PN.

So those quotes are doing some heavy lifting.
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Old 09-12-2019, 06:01 AM   #448
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Well, you asked!

The quotes are because some of the time I'm feeling quite good, and the more I manage my diet and my stress levels, the longer those periods last. But I started out with severe burning, stabbing, feeling like walking on crushed glass, feeling like both feet were broken, someone cutting my soles with a box cutter, and, from time to time, cramps in my toes that make my left foot look like it is going solo and wants a life of its own, big toe bending outwards like it is going to snap off. I can not really "feel" my toes, but when I do it feels like they are encased in cement. I also feel like I just walked 50 miles in bad shoes.

The EMG showed that apart from the suspected PN I also damaged my sural nerves starting a few inches under my knees. (which is part of the poly-neuropathy diagnosis)

The good periods make me feel I should go back to work (I had my own company), the bad ones make it clear I'm not up to it - not even close. I feel a lot better than when I started out, no doubt about it, but that progress stops at some point, which is typical for PN.

So those quotes are doing some heavy lifting.
Really sorry to hear that you have those types of symptoms. You did a way better job at describing my neuropathy than I've been able to ever do. Thanks so much as I makes me feel a lot less crazy hearing it for someone else.

The EMG tests were conclusive for me too. They knew right away that I had it based on that test. I never needed a biopsy or MRI or any other tests.

I too worry about the plateau of improving. I recently had another milestone that I thought I would share. I am a big fan of live music. When I came back home to NYC after being in treatment last August, I remember my first show that I saw and I was unable to stand up at a concert for more than 10 at a time. I would need to lean on something or take breaks sitting, or just sit the entire show.

Over labor day weekend I saw music 4 nights in a row. I was able to keep on the move cause the venue allowed for it, but rarely needed to sit, so that's an absolutely massive improvement than where I was a year ago. It's amazing what being with a group of people, with your adrenaline pumping can do for your strength. I find we are capable of a lot more than we think.

Neuropathy can be funny as I think we all know. The pain is still there in the same way, but I've gained strength. I have heard time and time again that it makes you weak, and I am sure that is part of it. But perhaps its also that there was muscle atrophy in my case as I was so sedentary for many years leading up to putting down the bottle?

Either way, I am happy with the improvements and hope that staying focused on diet and exercise can lead to more. Trying to make the most of my 40's as it seems that this doesn't get any easier as the time goes by.
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Old 09-12-2019, 04:16 PM   #449
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Well, you asked!

The quotes are because some of the time I'm feeling quite good, and the more I manage my diet and my stress levels, the longer those periods last. But I started out with severe burning, stabbing, feeling like walking on crushed glass, feeling like both feet were broken, someone cutting my soles with a box cutter, and, from time to time, cramps in my toes that make my left foot look like it is going solo and wants a life of its own, big toe bending outwards like it is going to snap off. I can not really "feel" my toes, but when I do it feels like they are encased in cement. I also feel like I just walked 50 miles in bad shoes.

The EMG showed that apart from the suspected PN I also damaged my sural nerves starting a few inches under my knees. (which is part of the poly-neuropathy diagnosis)

The good periods make me feel I should go back to work (I had my own company), the bad ones make it clear I'm not up to it - not even close. I feel a lot better than when I started out, no doubt about it, but that progress stops at some point, which is typical for PN.

So those quotes are doing some heavy lifting.
Thanks for the additional info. Interesting that you mention the progress stops at some point. How long was that time period for you? Was it a few months, years, before you plateaued?

Hopefully it resumes again at some point.
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Old 09-13-2019, 04:26 AM   #450
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I am a big fan of live music. When I came back home to NYC after being in treatment last August, I remember my first show that I saw and I was unable to stand up at a concert for more than 10 at a time. I would need to lean on something or take breaks sitting, or just sit the entire show.

Over labor day weekend I saw music 4 nights in a row. I was able to keep on the move cause the venue allowed for it, but rarely needed to sit, so that's an absolutely massive improvement than where I was a year ago.

Funny you mention that. In the summer of 2011 I finally got to see a hero of mine whom I admire since 1978. I felt awful, and thought about actually getting a wheelchair to get to the concert. This was before I got sober. I sat through the whole concert, and had a hard time concentrating on the music.



In 2014, they played in Belgium again, I was 2 years sober, and I stood & danced for 2 hours. Sure, I felt some pain the next day, but the difference was night & day. Even though it was the end of September, the concert was outdoors in a beautiful park, and it was 30°C. That night felt like a dream and made me realise how far I had come. I also realised that if I hadn't quit drinking I might probably be dead at that point...



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Thanks for the additional info. Interesting that you mention the progress stops at some point. How long was that time period for you? Was it a few months, years, before you plateaued?

I would say 4 to 5 years*. The current pains are nothing compared to what they used to be, but, at times, still bad enough to make working a very tough prospect. The most difficult to come to grips with is the swings. Some weeks/months go perfectly. No-pain-what-so-ever. I was able - 2 times - to drive 1000 miles & back without any real discomfort last year. Last week, just driving to the grocery store, 3 miles down the road, hurt, and I spent the rest of that day on the couch. It will get better again, it always does, but those swings mess with your head.


* those 5 years match up with scientific literature, that's really the window in which nerves can regenerate as far as they can in the best of conditions
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