Hello to all of you.
I am new to this forum. I apologize if this topic has been covered previously.
I am a 74 y/o male diagnosed with idiopathic small fiber PN (proven by skin biopsy) about 2 years ago, although in retrospect the symptoms have been present for a longer time. At around the same time I was diagnosed with a very slow growing abdominal B-cell lymphoma, which was resected. No chemo, and no recurrence so far.
I have used alcohol in moderately large amounts (3-4 drinks daily) for many years. No binge drinking, no drinking alone, no physical findings (liver damage, etc.)
At least one of my many doctors thinks the PN is caused by the drinking. Others, including the head of the department at my local university, disagree. As a trial, I stopped drinking entirely for 3 months, but the PN kept on getting worse, so I assumed the alcohol was not the cause.
Does anybody have any thoughts on this subject? In particular, thoughts on causation or not, time it takes for healing after stopping drinking, etc.
I have resumed drinking, but down to 2 or 3 drinks per evening.
Thanks in advance for your comments.

Hi jeffrapp

Welcome to NeuroTalk :).

It is very hard to say how alcohol-induced PN varies once somebody has stopped drinking; everybody is different.

In my case my PN is only in my hands and I stopped drinking years ago. It has been stable/slowly decreasing since then.

All the best.

The 7 year Itch is not a thing when it comes to sobriety it seems, as today I'm 7 years in and not bored with it at all.


Year 8 here we come. ;)

That's awesome Wide-O :).

7 years in, you rock :hug:

Congrats on 7 years!

CONGRATS Wide-O!!

Ta all!




Heh, I have a standing invitation to visit my buddy in Ottawa in September. These are all musicians/studio guys/foodies from all over the world (one from NZ, France, Tasmania maybe, US, UK etc), 6th time they are organizing this (we all met on a pro-audio forum), on a remote island, so it's really really really tempting, but sadly with our pets getting really old now, and my wife having other things on her mind, it's probably not going to work out.


Oh well, he's only been inviting me since, erm, 2010, he's been at my place every year, so I'm sure it will happen one day. :rolleyes:;)

They let me back in the USA! I was only there for 4 days (and during the Raptors parade too) so it was a little hectic, but I have another trip planned in September too. This time to the magical island of Newfoundland! Florida this winter then a trip to the west coast in British Columbia....I have never seen the Rockies in person.

2891 days sober

It's a long weekend!! Woohoo!

Icehouse, congrats on 2891 days and I hope that you enjoy the long weekend :).

2600 days in. We finally got out of a really unpleasant heat wave. New records were set, and I can confirm 41.8°C just isn't much fun (107.2F).

That is great about 2600 days :).

Wow, I have been watching the temperatures in Europe; anything over 40 °C is not good.

Woohoo! Stay cool!

Ahem, <clears throat> I would like to introduce Mr. Eight Years.

:D

Good one Icehouse :)!

Nice one. :Tip-Hat:

Just diagnosed
 

Hello,

I have just been diagnosed with AN and have read through this thread. Thanks to all for the great information. I just have two quick questions. For those using the supplement recommendation from mrsD and Icehouse listed below..do you take all 3 daily? Are there side effects/risks with the high levels of Vitamin B?

Centrum Men Under 50, Multivitamin, 200-Count Bottle
Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Jarrow Formulations Jarrow B-right Complex, 100 Capsules


Thanks so much for you help!


Wes

Hi Wes

Welcome to NT in general and this thread in particular :).

I took that for a couple years with no side effects....now I am just on the muliti-vitamin and a daily D3 2000iu...

I just had a physical and I am in perfect health - except for a tiny cholesterol issue.. :)

Thanks!!!
 

Thank you and appreciate the welcome!!!! I will document my progress as the months/years progress. Day 2 of no alcohol and I feel like I have lost my best friend :{

Hello all.

I thought I would start an ongoing detail of my journey from beginning to until? I suspect the PN is from moderate/heavy social alcohol use over many years. The first symptom was thumb twitching a year or so ago. Then in early April of this year (2019) after having 10 beers the night before, I awoke to tingling in my left hand. This then progressed to the classic "pins, needles and tingling" in my hands, skin crawling just above my left ankle and light-headedness.

I suspected PN from the beginning based on internet searches and dramatically scaled back alcohol use. The diagnosis was confirmed recently by my Neurologist after a EMG test (he said nothing other than "mild neuropathy") .

I was in denial at first and tried to just reduce the alcohol consumption significantly, but there has been no noticeable improvement and very slight progression over the past 4 1/2 months. After an appointment with my doctor on Friday, I have decided to get serious about trying to get better (although I know there is no guarantee of this with PN). Detailed below are some details about me and my recovery plan that I will be tracking on the forum. Any other help or recommendations would be really appreciated!

* 53 year old male in good health with healthy diet and vigorous exercise 4 times a week. Had a colectomy/IRA in 2007 but recovered quickly and no issues since 2007 with that.

* A1C in the "pre diabetic" zone, but not diagnosed a diabetic (we tested this to begin with).

* Stopping all alcohol use (two days in now).

* Starting a vitamin supplementation regimen recommended by mrsD and Icehouse on this site that includes the following daily:
-Centrum Silver
- Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
- Jarrow Formulations Jarrow B-right Complex, 100 Capsules

Thanks again and I hope everyone is having a great weekend.

Hi CTman, sounds like you are making good decisions and are heading in a good direction. Cutting back alcohol is the first thing I was told to tackle. I unfortunately was too deep into my addiction cycle, and did not listen. Two more years of on and off drinking made it much worse. Nothing I can do about it now though aside to just learn from it.

For me exercise is key, and it seems that you have that covered. I find that starting off the morning with something that gets my blood flowing sets me up for a much better day than not.

I also moved to a no sugar, low carb diet. This is also something I find keeps the pain on the lower end of the spectrum of what I experience. Might not be for everyone, but I ran it by my doctor and his feedback was that I should keep doing whatever I was doing because my numbers were great after a couple of months. Since I am part of communities that focus on low carb, no sugar lifestyle, I read about a lot of people reversing their diabetes all the time. Perhaps it's something to look into, while keeping your Dr in the loop.

Great work on the no drinking part of it. That was very difficult to me and is where my focus was at first. Because if I didn't get that right, it was going to be impossible to make any progress in the other area's. Once that was under control I was able to start making progress with diet and fitness. While I am not as physically capable as I would like to be as a result of neuropathy, it has forced me to improve my lifestyle in many other ways, and has given me a perspective on life that I would never have gotten without it. So almost a blessing and a curse. Overall, 16 months in, life has gotten much much better though.

I think it's a great sign that the feedback from the DR was mild neuropathy. I would stay away from a drink at all costs, be easy on yourself and see how things are over a few months down the line and see if any other adjustments can help. This is a great community with a wealth of knowledge. I researched Alcoholic / PN for two years until I stumbled on this site and it's where I found the most info out of anywhere, DR visits included.

Thanks so much for the advice and words of encouragement. Giving up drinking is the toughest thing ever...I feel as if I have lost my best friend and the only thing I looked forward too every day. I hope it gets easier (3 days in...a lifetime to go).

Ug...I can tell you it will get easier, a whole lot easier, but probably not any time soon. It took me about a year before I shook the "need" for a drink. I counteracted that feeling with soda (the brain thinks it likes the carbonation) and smoking (I don't advise this by the way). I quit the cigarettes a few years later and still enjoy the odd cigar.

It's a psychological game to me. I had to trick my brain into thinking it liked other stuff. :wink:

I have since quit drinking soda (pop for the northerners) and that was super easy.

Don't touch my coffee though.... :D

Thanks!!! Really appreciate the perspective. Also, the Neuropathy has gotten noticeably worse in the 3 days since I stopped drinking. Is this typical that it spikes right after you cut alcohol? Thanks again!!!

I was a daily drinker for a while and from what I can tell, it didn't get bad until I dried out for a few days. First it was just tingles and twitches. But in the end when I dried up in a detox I was in a world of pain.

It could be that it's now out of your system and you are feeling it. But I am not sure our situations are comparable if you weren't drinking in the same way I was.

With that said, perhaps knowing that it's there is bringing it into focus.

For mild cases, Ive read it can clear up. Best thing that I could do for myself was to try and get healthier. That's just my experience but even starting off with a little here and a little there. Getting in tune with my body was key. Understanding how to fit in exercises and stretches throughout the day to get my blood circulating. Eating better. Making sure I had done enough in the day that I would be able to sleep. It was a process for me, but aside from the nagging neuropathy, I'm much healthier because of it.

Not sure if this has been posted here but it's got a lot of good info.

Alcoholic neuropathy: possible mechanisms and future treatment possibilities

Hey folks, a quick one:

1) I had it confirmed 2 days ago, unequivocally, that glucose (sugar/carbs) does affect the nerve endings - that’s one of the reasons diabetics are prone to PN - and does make them “swell” in layman’s terms, but with no way to go. Ouch! He is an expert neurologist only working with PN patients. I felt a huge reduction in pain after cleaning up my diet in 2013. My previous neurologist looked at me like I was an idiot after I reported this, but it is science, not just “internet knowledge”. You can get a fatty liver from soda & fruit juice without ever touching a drop of alcohol. There are 8 year olds with fatty livers. (after all, alcohol is fermented fructose).

2) Alcohol is a very effective pain killer, so it is perfectly normal to feel much much worse immediately after quitting. This does go away, but do not expect a complete reversal. It happens, but it is rare. But the really bad pain will subside, no doubt about that. It does get better.

3) Do not let that discourage you. Continuing to drink after the diagnosis will cause a world of pain and/or disability (depending on what type of nerves were damaged). I’m perfectly happy not drinking, it’s not a thing anymore. I was sure it would be impossible to quit. I found out it’s not.*. I was sure my life would be empty and boring. It’s not. I thought I would no longer be able to play music, to be creative, etc. All wrong.

4) Sugary stuff can help you quit, that’s the paradox. Indulge if that helps you stay sober, you can always take that next step when you find your footing. Obviously, if you can do both, go for it!

* It’s 9:30 PM here and it’s the first time today, well, this week, that I think about alcohol, and only because I’m writing about it here. I feel - pinky swear - zero attraction to drinking though. And that in itself feels great. :cool: My wife still drinks (one of those weird normal drinkers) and it doesn’t trigger me anymore. Do not do this in the beginning though, make it as easy on yourself as you possibly can, it’s not a challenge.

Good luck, and keep asking questions!

Thanks so much!!! Appreciate!

[QUOTE=On_A_Freeway;1279079]I was a daily drinker for a while and from what I can tell, it didn't get bad until I dried out for a few days. First it was just tingles and twitches. But in the end when I dried up in a detox I was in a world of pain.

It could be that it's now out of your system and you are feeling it. But I am not sure our situations are comparable if you weren't drinking in the same way I was.

With that said, perhaps knowing that it's there is bringing it into focus.

For mild cases, Ive read it can clear up. Best thing that I could do for myself was to try and get healthier. That's just my experience but even starting off with a little here and a little there. Getting in tune with my body was key. Understanding how to fit in exercises and stretches throughout the day to get my blood circulating. Eating better. Making sure I had done enough in the day that I would be able to sleep. It was a process for me, but aside from the nagging neuropathy, I'm much healthier because of it.

Not sure if this has been posted here but it's got a lot of good info.

____________________________________________
Thansk so much!!! This is really helpful!

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....

Ctman, adding to the wise thoughts of everybody else.

I stopped drinking when I spent about a month as a voluntary patient in a psychiatric hospital, taking first steps towards dealing with alcohol abuse and Major Depressive Disorder.

The first week was not fun; sweating, agitation and feeling generally lousy. I was closely monitored by the nurses during this and I expect that they reported
back to the psychiatrists in case more intervention was indicated; it wasn't.

After that week it was a nice feeling to notice my mind starting to clear. That has been a big factor in my staying sober since then and I hope the same will be true for you.

Similar spot Ctman - been feeling some weakness in my legs for a couple of months, but after a summer vacation with some heavy drinking the slight tingling started and I knew something was wrong.

Going on 2 weeks now without any alcohol. Started taking some vitamins as well. Have a neuro appt on sept 17th which I suspect with confirm everything. I too try and work out a few times a week, but this has made it more difficult as my legs are much more sore.

I am hopeful I can get to the point where I can have a couple of glasses of wine with my wife, or clients. But want to let things heal and hopefully have the symptoms go away or at least almost go away.

When you say you significantly cut back, are you talking like a few beers a night?

I share the same hope...I really just want to get back to the point where I can enjoy alcohol (a few drinks) socially with family and friends again. I significantly cut back in early April right when the symptoms began - that consisted of no more than 2-3 drinks a few days a week. Unfortunately there was no improvement and perhaps slight progession. For the last week and a half I completely cut alcohol out and have seen improvement - but it is like a good day/bad day thing (some days better than others), but definatly better.

Good luck with everything. 2-3 drinks seems like it shouldn't really have much impact as I was under the impression it was the excess that caused the damage. But also know it is different person to person and day to day. Crazy stuff.

Glad things are moving in the rogut direction now, hopefully in a month or so all is good!

It shouldn't, but the bad news is it most probably will (and yes, we are all different, but experience teaches us this).


Even though the complete reason for developing alcohol related PN is not fully understood (according to PN neurologist), it will be a combination of bad food habits (or even skipping food altogether for some), lack of vitamins (B1, B12 etc), your body height (!), the aldehydes coming from processing the alcohol, the congeners, reduced liver function, etc etc.


But once you have it, you become very sensitive to alcohol. Don't trust me on this, you will probably experience it. It's the dream of many to just go back to being a social and responsible drinker, and 99% fails in this - obviously depending if you had a real problem in the first place.


Please don't take this the wrong way: if you can do it, the more power to you! It's just that the statistics (and my experience) show you may waste a lot of time with it, and probably cause more pain than needed. No harm in trying to imagine a way of life without it, even if you don't plan on it yet.


But first things first: keep up what you are doing to turn it around or stop it in its tracks.

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 ;)

Totally with you there.

2954 days sober

Just got back from a weekend camping trip in a 22ft VW....life is grand!

Wait till next month...I have a special treat for you all ;)

You're running for President! :D


OK, maybe not. Now I'm curious. ;)