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New Member - Severe alcoholic neuropathy already improving

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Old 03-24-2015, 05:52 PM   #1
Sones
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Default New Member - Severe alcoholic neuropathy already improving

Hey everyone,

I stumbled upon this thread while researching alcoholic neuropathy, and it has been so helpful to me. Thank you so much in advance. I have found that there is little information available on alcoholic neuropathy on the internet, and the information that is available is negative, misleading, and lacks the patient's perspective. Thank you, thank you. I am looking forward to hearing your responses.

And now for my story:
Where to start. My story is actually my boyfriend's story. My boyfriend, let's call him T, is a touring musician in a popular band. He's 28, and has been living a crazy lifestyle full of reckless partying for the past 7 years since his band started playing shows. T was binge drinking HEAVILY 2-4 nights a week, and doing cocaine to boot. I have never seen someone drink as heavily as T. He could stay up all night partying, and go out to get more beer at 9 in the morning. The cocaine and the alcohol were always used in combination. Alcohol made him crave cocaine, so he would take a few bumps, and use more alcohol to calm himself down from the cocaine, and take a few more bumps for more energy, and drink more to calm down, etc etc etc until he would FINALLY pass out around 1 or 2 pm after having partied more than 12 hours straight. All the while, over the past 7 years, he has maintained a job, friendships, relationships, and family ties. I would say he was a very high functioning addict/alcoholic, and was in denial of the addiction for many, many years, until perhaps a few weeks ago.

About a year ago, T noticed that it became difficult for him to play guitar. He didn't think much of it, and continued on with his "party" lifestyle. Over the following six months, after more and more drinking and drugs, he lost the ability to play guitar completely. Not only could his fingers not push down on the fret board to make the chords, but he could not even hold a pick in his right hand. Over the last six months, while he was no longer able to play music, he continued to tour with his band and party, party, party, and he continued to get worse and worse. Slowly, over time, he has almost lost his ability to walk. He was only weeks away from a wheelchair. He could not move the joint on his left foot, the muscles in his arms and legs became tiny, he could not pick up a cup without using his forearms, couldn't tie his shoes, couldn't button his shirt, every step he took was heavy, he fell all the time, he couldn't walk more than a block without becoming exhausted, his muscles were constantly in spasm, I could go on and on.

All the while, we were scared to death he had a neurological disorder. Denial of the disease of addiction caused us to think he has ALS, or MS, or some other devastating, progressive neurological condition whose symptoms are shockingly similar to alcoholic neuropathy. We saw a neurologist, who ordered blood tests, MRI's and EKGs. After getting the results back from some testing, the neurologist said T was likely to have alcoholic neuropathy/myopathy. we are still in the process of ruling all other causes out, but he believes the root of this problem is addiction, and we do too. This revelation, along with emotional pleas from his family and friends, caused T to re-evaluate. He now (FINALLY) admits to his addiction, and has been sober from cocaine and alcohol since March 3 (3 weeks now)

Miraculously, we have already started to see some drastic improvements in the first weeks of his sobriety. We also have him on a comprehensive vitamin regimen. Just 2 weeks ago, T had to use the electric wheelchair in the grocery store. Today, his limp has visibly improved. Yesterday, we had a mini adventure and walked around downtown. I'd say we walked upwards of 2 or 3 miles, which was simply impossible and unfathomable just 2 weeks ago. I never thought he would start to improve this quickly. It is so encouraging. So far, no improvement in the hands, but we'll take whatever improvement we can get.

So, now that you know our story, I have some questions to throw out there. Any help anyone can offer would be greatly appreciated:
1. Most of my research (other than this forum) has stated that alcoholic neuropathy causes permanent damage that is not reversible. This must not be true, considering how much T has improved already. Is it possible to make a FULL recovery from alcoholic neuropathy?
2. For those of you who lost the ability to use your hands, how long did it take you to get feeling/movement back, if ever?
3. He is currently taking an intense vitamin regimen of vitamin b12 and b2, vitamin d, vitamin As, and vitamin c. I there any brand of vitamin B that anyone has used that you found has worked well in treating alcoholic neuropathy?
4. He has quit alcohol and drugs, but doesn't want to quit his band. Should he?

Thank you to everyone who participated in this forum. It is a lifesaver.
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PamelaJune (08-03-2017)
Old 03-25-2015, 08:29 AM   #2
Icehouse
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1) I am not sure about FULL recovery but I think a significant improvement is very possible. 4 years later I still am not 100% but pretty close!
2) Less than a year after complete removal of alcohol and staying with a vitamin regime
3) Centrum Silver has been my choice, along with benfotiamine (sp?) and r-lipoic acid at the start.
4) No, I am learning how to play guitar right now and the fingers work perfect. Tell him to stay with it, the tingling and numbness will go away in the hands if he stays off the booze and lets the nerves heal slowly.

All the best to him (and you) as you wade through the depths of this disease. I do, however, recommend that he get involved in some meetings whether it be AA or CR. They are tough to manage at first, but they can be a big help knowing there are others in the same boat.
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newstown (03-25-2015)
Old 03-25-2015, 10:52 AM   #3
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Welcome here. I have been a guitar player for 40 years now, so I'm not totally unfamiliar with this situation...

Quote:
1. Most of my research (other than this forum) has stated that alcoholic neuropathy causes permanent damage that is not reversible. This must not be true, considering how much T has improved already. Is it possible to make a FULL recovery from alcoholic neuropathy?
One of the problems is that not many people who stop drinking stay stopped, so there may not be very many people recovering from their neuropathy either.

For those who do stay stopped, while recovery may not be 100% in most cases, the difference can be between constant pain and agony up to slight bother and having bad days. Peripheral nerves are slow to heal - for the same reason they are the first to fail. It is an ongoing process, and there will be setbacks as well. Expecting them and not freaking out is key. Stress is your enemy, especially when suffering from neuropathy.

Quote:
2. For those of you who lost the ability to use your hands, how long did it take you to get feeling/movement back, if ever?
I never lost motor nerve response in my hands, but did have the beginning of burning sensations and cramps. I'm now close to being 3 years sober, and both problems have gone away for 95%.

Quote:
3. He is currently taking an intense vitamin regimen of vitamin b12 and b2, vitamin d, vitamin As, and vitamin c. I there any brand of vitamin B that anyone has used that you found has worked well in treating alcoholic neuropathy?
For me, apart from the usual vitamins, I found that a change in diet was extremely helpful. Touring alcoholic musicians aren't exactly known for having great diets to start with, but cleaning it up, avoiding sugar (which works in many ways like alcohol, and is processed in a similar way by the liver) was a tremendous help. And with sugar, I mean: fructose. Forget "natural": honey is natural but still contains the exact same fructose as white sugar. Managing carbs also goes a long way. Personally I read up on anti-inflammatory diets (Zone etc.) and found a way to make them work for me without going "zealot".

Also, for me, taking high quality fish oil has been a big help. And I know it's not just placebo: after I got 95% better I started slacking on both vitamins and omega3... Pain slowly came back but in a "frog in slowly boiling water" way: I only really noticed when I decided to commit to my diet/fish oil intake again. Different people react to different substances, but even most doctors know that omega3 can be a good help.

Quote:
4. He has quit alcohol and drugs, but doesn't want to quit his band. Should he?
Like Icehouse said: maintaining sobriety is going to be the next important step. Stopping is one thing - especially when you see rapid improvement - but it is human to become complacent and think "hey, I'm OK now, I'm sure I can have a couple". That's where most of us go wrong, and why the statistics of alcoholic neuropathy don't look too promising.

As for playing guitar: a break would be a good thing, as he might start to hurt some muscles/joints because of the impaired feel/feedback. Slowly building up again using a very easy to play guitar with very light strings would be best. Back off when it starts to hurt, this is not a "no pain no gain" thing.

As for the music scene: you would be surprised how many sober musicians there are these days (and there have been). One book I can really recommend - as it helped me to reframe my "I'm a musican, a songwriter, an artist, I can't be sober!" stance is "Le Freak" by Nile Rodgers, one of the living guitar legends, a producer who sold about 300 million albums, and ... a horrible junkie living on cocaine and booze for most of the 80ties. He got sober in 1994, and writes freely and with humor about his breakdown and stay in rehab. He's been sober for 21 years now, and still had a number one hit last year with Daft Punk's "Get Lucky".

This book probably saved my life.

So yeah, it is absolutely possible to be sober and remain sober while being a working musician, but the commitment has to come from inside, and most people (if not all...) need some kind of program to help them to stay focused, and deal with sobriety.

Personally, I bought a grand piano from the money I saved on drinking in the first 2 years of sobriety, and playing around on that every day is one of the nicest feelings I had in a very long time. It beats drumming on empty bottles.

Good luck, lots of things to try, never give up hope.
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Icehouse (03-25-2015)
Old 03-26-2015, 07:39 PM   #4
Sones
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Thanks so much for your replies. It is encouraging to know that playing guitar again is a possibility in the future. And I will definitely get him that book. Even the title resonates with his situation. I don't want him so quit his band, I just wonder if it's possible for a recovering addict to practice, play, and tour again without relapsing. Its just…alcohol and cocaine are so deeply ingrained in the culture of his band. It is always around. I know it's up to the individual, but it seems like it would be so hard. Thank you so much for the suggestion. Definitely going to buy it on amazon. As far as meetings go, he doesn't want to go, and I don't feel like I can make him. Miraculously he's been able to abstain regardless (he hasn't gone more than a week without doing blow in 7 years). Is there anything else I can do to help get him a little support? Does a person need to go to meetings to stay sober?

As for improvements, there are new milestones every day. Today wiggled his toes. Doesn't sound like much, but it meant the world to us.

Thanks again.
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Wide-O (03-27-2015)
Old 03-26-2015, 08:11 PM   #5
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Quote:
Originally Posted by Sones View Post
Is there anything else I can do to help get him a little support? Does a person need to go to meetings to stay sober?
Accountability is key (in my opinion) and, no, he does not "need" to go to meetings to be sober but they do help in most cases.

If he is willing to have a close sober friend be an accountability partner with him then he will have an easier time staying sober. Someone he can hang out with, call, text, message, etc if he has the urge.

Spending time alone is NOT a good thing for one in recovery and getting him out of the house and staying busy is important.

Sobriety is not easy alone, it takes support however that is achieved.
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Old 08-02-2017, 06:25 PM   #6
Taybey
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Quote:
Originally Posted by Sones View Post
Hey everyone,

I stumbled upon this thread while researching alcoholic neuropathy, and it has been so helpful to me. Thank you so much in advance. I have found that there is little information available on alcoholic neuropathy on the internet, and the information that is available is negative, misleading, and lacks the patient's perspective. Thank you, thank you. I am looking forward to hearing your responses.

And now for my story:
Where to start. My story is actually my boyfriend's story. My boyfriend, let's call him T, is a touring musician in a popular band. He's 28, and has been living a crazy lifestyle full of reckless partying for the past 7 years since his band started playing shows. T was binge drinking HEAVILY 2-4 nights a week, and doing cocaine to boot. I have never seen someone drink as heavily as T. He could stay up all night partying, and go out to get more beer at 9 in the morning. The cocaine and the alcohol were always used in combination. Alcohol made him crave cocaine, so he would take a few bumps, and use more alcohol to calm himself down from the cocaine, and take a few more bumps for more energy, and drink more to calm down, etc etc etc until he would FINALLY pass out around 1 or 2 pm after having partied more than 12 hours straight. All the while, over the past 7 years, he has maintained a job, friendships, relationships, and family ties. I would say he was a very high functioning addict/alcoholic, and was in denial of the addiction for many, many years, until perhaps a few weeks ago.

About a year ago, T noticed that it became difficult for him to play guitar. He didn't think much of it, and continued on with his "party" lifestyle. Over the following six months, after more and more drinking and drugs, he lost the ability to play guitar completely. Not only could his fingers not push down on the fret board to make the chords, but he could not even hold a pick in his right hand. Over the last six months, while he was no longer able to play music, he continued to tour with his band and party, party, party, and he continued to get worse and worse. Slowly, over time, he has almost lost his ability to walk. He was only weeks away from a wheelchair. He could not move the joint on his left foot, the muscles in his arms and legs became tiny, he could not pick up a cup without using his forearms, couldn't tie his shoes, couldn't button his shirt, every step he took was heavy, he fell all the time, he couldn't walk more than a block without becoming exhausted, his muscles were constantly in spasm, I could go on and on.

All the while, we were scared to death he had a neurological disorder. Denial of the disease of addiction caused us to think he has ALS, or MS, or some other devastating, progressive neurological condition whose symptoms are shockingly similar to alcoholic neuropathy. We saw a neurologist, who ordered blood tests, MRI's and EKGs. After getting the results back from some testing, the neurologist said T was likely to have alcoholic neuropathy/myopathy. we are still in the process of ruling all other causes out, but he believes the root of this problem is addiction, and we do too. This revelation, along with emotional pleas from his family and friends, caused T to re-evaluate. He now (FINALLY) admits to his addiction, and has been sober from cocaine and alcohol since March 3 (3 weeks now)

Miraculously, we have already started to see some drastic improvements in the first weeks of his sobriety. We also have him on a comprehensive vitamin regimen. Just 2 weeks ago, T had to use the electric wheelchair in the grocery store. Today, his limp has visibly improved. Yesterday, we had a mini adventure and walked around downtown. I'd say we walked upwards of 2 or 3 miles, which was simply impossible and unfathomable just 2 weeks ago. I never thought he would start to improve this quickly. It is so encouraging. So far, no improvement in the hands, but we'll take whatever improvement we can get.

So, now that you know our story, I have some questions to throw out there. Any help anyone can offer would be greatly appreciated:
1. Most of my research (other than this forum) has stated that alcoholic neuropathy causes permanent damage that is not reversible. This must not be true, considering how much T has improved already. Is it possible to make a FULL recovery from alcoholic neuropathy?
2. For those of you who lost the ability to use your hands, how long did it take you to get feeling/movement back, if ever?
3. He is currently taking an intense vitamin regimen of vitamin b12 and b2, vitamin d, vitamin As, and vitamin c. I there any brand of vitamin B that anyone has used that you found has worked well in treating alcoholic neuropathy?
4. He has quit alcohol and drugs, but doesn't want to quit his band. Should he?

Thank you to everyone who participated in this forum. It is a lifesaver.
What are the vitimans he is taking?
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kiwi33 (08-03-2017)
Old 08-03-2017, 04:56 AM   #7
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Hi Taybey

Welcome to NeuroTalk .

You might not get an answer from Sones because she has not been round for a while.

You are most welcome to start your own thread in this forum. There are many "regulars" here who support and encourage each other.

Trying to answer your question; I don't take vitamins apart from, in the early stages of dealing with my alcohol abuse, niacin (Vitamin B3), because it can be depleted in people who abuse alcohol.

However, I do try to eat in a healthy way; lots of fresh fruit and vegetables. fish, wholegrain products, meat in moderation, minimal processed foods, etc.

All the best.
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