I wonder if we are all talking about the same tests. I had it done 3 times (to measure progress if any), and while it didn't really hurt badly - compared to the PN itself - it did involve sticking needles into my leg. Second time there was even a little bit of blood, which is how I know it was needles and not just a sensor. I'm assuming he was trying to get as close to the nerve as possible and then measure the conductivity lower in the feet.

That said, I'm not convinced an EMG changes much to the diagnose. In my case the larger nerves (sural) were damaged, so he could easily measure it, but in some cases when it's just the small fibres an EMG will not necessarily pick it up (if at all).

In any case, it will not make the cause (or causes) any clearer. But if alcohol was ever involved, it's a fair bet that it's the cause or part of the cause.

Well, had to wait until today then: 979 days sober. :p;) For some reason I'm still lagging behind, no matter how hard I try!

It's not fair. ;)

Maybe you are not trying hard enough!! :D

Feels good, right?

Could someone elaborate, wiki version? I've read this thread and vitamin thread as well. Confused a little, sorry.
Should you take Benfotiamine AND a B-complex AND B-12?

Currently taking - Krill oil, Mutli-vitamin, and diet improvements with juicing. Would like to maximize with adding:
Benfotiamine
R-lipoic acid or alpha lipoic (maybe)
Vit D supplement

Thanks!

Yes, I would do both. The multivitamin has trace nutrients in it that you need. But using both forms of thiamin is safe. Not to worry.

Perhaps I did get stuck with needles, wide o, kinda bugs me that I can't remember exactly, but I had the EMG and the nerve conduction tests, got the concise little 2 page report around here somewhere. In any event, personally I didn't find it at all unpleasant. I was probably so preoccupied with what the results might be that I wasn't paying much attention.

1307 days sober

For those in the recovery process via "meetings" there is something known as "making amends". I am still doing that.

I finished another letter last night that I plan on sending today (but I have been writing this letter for over a year) and this will almost complete this portion of my life.

Regret, shame and selfishness consume a majority of alcoholics and this has been the hardest part in my journey upwards. But, for me, it is a process that I must complete to be, well, complete.

I saw a post on FB the other day that said something about "green" fruits helping with nerve issues. Any truth to this?

I have never seen anything about green fruits and nerve tissue, Icehouse, but then that doesn't mean much. Don't see it in a Medline search either.

I have a question too: Can Tramadol tapering and cessation aggravate PN symptoms? I have a long standing script for the stuff and use it as necessary, which I keep at a minimum because I dont like the moodiness of it all. I have back and knee pain problems and sometimes the over the counter stuff just doesn't cut it. I weaned myself off over few weeks and am on day 5 of no intake, but my PN is off the dial. I did feel a little better today so I resumed a VERY light workout. 20 minutes of very light bike riding at the gym. I have muscle twitch and all sorts of unpleasantness. Any thoughts from Mrs. D or anyone else? Many thanks!!

Tramadol works on both serotonin receptors and mu opiate ones.

It can take a while to taper off and resettle the neurotransmitters.

Tramadol has a more specific action on nerve pain, too, according to some experts.

You might try the magnesium lotion on your legs to help with your exercise:

http://www.amazon.com/Morton-Epsom-L...n+Epsom+lotion

Also at local WalMarts and some Walgreen's but not at all stores.
Use about a quarter's diameter divided between both legs. Do the fronts and calves below the knee and include the ankles.
The magnesium helps with pain by blocking the NMDA pain receptors. Apply once a day (at night is a good time)
and rub it in well, so the magnesium gets absorbed.

Hey, Newstown, I was reading your recent posts and thought of the lion's mane mushroom post you made a couple months ago. Has it helped at all? Any side effects?

WannaGet, I haven't noticed any effect, and I have been taking it regularly. Of course, nerve regeneration is a long term thing, and it is fairly inexpensive, so I am keeping it in my list 'o stuff I take. I am also on Day 5 of Tramadol cessation and that is really messing with me , as noted above. I don't recall it having this much effect before, maybe I took it a bit longer this time. BE CAREFUL with this stuff if you ever take it.

Thanks, keep us posted!

A 1000 days. It does sound like a lot, but it just started with 1 day.

No more day zero for me. ;)

Now THAT is a milestone. Congrats!

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 ago 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?

Hello Sones,

I placed a copy of your post to a thread of your own also - here is the link for it -
http://neurotalk.psychcentral.com/thread217901.html

Welcome Sones. :Tip-Hat:

Yes, welcome! I will reply in your thread re: the questions :)

Any thoughts?
 

I posted this in the wrong thread yesterday, sorry bout that. Lemme try again:

Any thoughts?
I haven't posted in a while, mostly because I don't have a real positive update and don't see much point in being a downer. But in the past 2 months, i have experienced a worsening of my PN symptoms. Fortunately, it's not what I would normally refer to as "pain" so much as something more "pain like" and increased numbness, muscle twitching, and very difficult to describe sensations that most of you can probably relate to, I'm sure. In previous posts, I have described how I quit drinking in July of 2013, then experimented for a few weeks a year later, then dropped it again. My discomfort is considerably worse than when I was first tested by the neurologist in January, 2013. I have an annual physical the first of May and would appreciate any suggestions on topics I should discuss with my regular Doc. I plan to ask him about massage, acupuncture, infrared, and other stuff I am sure he will say are unproven. I suppose i could even ask him about weed, it's legal here for medical use. Any thoughts? Mrs D? Icehouse? Wide-O? Anyone? Thanks!

I can only briefly comment on the weed... I wanted to try it, got a vaporizer specifically for cannabis, and found out it's not easy to find weed that is geared to pain control in Holland. Most weed is selected for high THC content, and what we normally want is CBD.

After I found some very mellow weed with minimal THC I tried it, and although I can't say it did nothing - it made me calmer for a while - I can't (and never could) get used to the feeling of "not being in control" that weed seems to give me. I know, that sounds a bit strange for a confirmed alcoholic... but that's how it works for me.

I don't know what the possibilities are in your state or if it's even appropriate to mention, but if you want to try it you really want medicinal weed and not "medicinal wink wink" weed if you catch my drift. Vaporizing it is - after ingestion - probably the cleanest way, but a decent device is not inexpensive and needs to be learned on how to use it.

In the end, I think - if it works for you - that it's a temporary relief, and not something that you want to use 24/7. It would more be like taking an occasional break - at least, that's how it would work for me if I can ever find a version that doesn't increase paranoid feelings.

My best longer term bet is still the Zone diet/fish oil that I talked about so much. Did you give that a try? It's pretty easy to do, and you should notice some improvement after about 30 days. If it doesn't work for you the worst that can happen is that you may lose a few pounds or get addicted to broccoli. ;)

I like your suggestion, Wide-O, my diet has been terrible. Yes, I have done low carb, or zone like diets before, and always felt good on them. I just find it hard to believe that it would effect PN much, but I am starting today!! Also, i will add, the fish oil. I used it years ago , but dont much anymore. I have the same experience with thc, more or less, and probably wont ask him about it unless the atmosphere is friendly to that. What do you do to reduce stress? I dont think I have an inordinate amount of it, but maybe I do. I exercise, meditate, etc.....but again, my diet has been horrid. I shall fix that while I wait for my appointment. Thanks so much.

I'd recommend reading "The Inflammation Zone" to get a good handle on what he is trying to do. It's one thing to hear it from me, it's another to have a good in-depth explanation from someone who has been working on this for a good while.

Yes, he has a commercial interest - he sells fish oil - and many of his books are repetitive, but I have seen it work first hand, and many of his findings are repeated by others. Most docs would say that lowering your triglycerides by 60% in 6 months with or without medication is impossible, but it's exactly what happened to me: from 200 to 70, which is quite spectacular. You basically control your hormones, reduce internal inflammation, and this has a good effect on PN too.

Obviously, it's about more than just the PN: even though I did not follow everything to the letter (if I eat an egg I also eat the yolk, bite me ;) ), and allowed myself the occasional "day off", correcting cholesterol levels in such a way and losing 70 pounds (ending up with a BMI - for what that's worth - of 21) without too much effort really did me a lot of good.

Ordering the book right now, Wide-O, thank you so much. Today is one of the worse days I have had since being diagnosed with the stuff...very frustrating. There is quite a bit on pubmed about fish oil and pn, I am surprised I hadn't heard of it much. I called and made an appointment for therapeutic massage today. I am so sick of this, i am throwing the kitchen sink at it. Is that bySears?

Yes, Barry Sears. Forgot to say that you obviously don't need to buy the fish oil from him (d'oh!) but do make sure you get high quality fish oil. Like with everything the quality can wildly vary. Good luck, and give it some time - I know how rotten it feels when the pain gets worse.

I downloaded the book, Wide-O, that is an incredibly healthy diet. I dont know if I can strictly adhere to it, but i am trying. I also bought some fish oil. I also feel much much better, although I realize it's much too soon to say fish oil has anything to do with it. But i will take it. What a baffling disorder.

1340 days sober.

Baffling is a good word for PN for sure. I had a rough couple days with my "balance". I am surprised I was not picked up for public intoxication...HAHA. Anyway, this fish oil thing still has me intrigued and I hope for some updates on that before I take the slippery plunge.

Sorry to hear that Ice. The difference between the best days and the worst days is baffling indeed. I comfort myself that both have moved in the good direction though, where during the best days I have no pain or discomfort what so ever. But falling back to a previous level (with discomfort) makes you scratch your head, and can be very discouraging. It leaves you wondering "what am I doing wrong now?"

As for the fish oil - it all depends on your current diet. I know it sounds a bit like snake oil*, and if you currently eat a lot of fresh fish it might not really help you at much at all, but it is a fact that for most of us our diets lack (for several reasons) omega 3 fatty acids.

I know that it helped me a lot. It could be coincidence - I'm skeptical enough to take that into account - but I don't think so.

* anecdote: it is assumed that snake oil actually used to be a real thing, taken from sea snakes from the Chinese sea, and ... containing a lot of omega3. But then it was copied and the bottles filled with "whatever" - hence the saying. Mind you, it's a nice story, but it could be an amusing hoax. :)

Edit: although, this is a good read: http://patients.about.com/od/decisio...a/Snakeoil.htm

I don't see how a week of fish oil could make a big difference, but my feet and lower legs now feel *better* than the have in a long time. I take a lot of it.

I admit that my diet is not the best. I do NOT eat fast food but I do eat a lot of food prepped for commercial use as I work in a "homeless shelter" that prepares meals in bulk. I do cook at home but I am a huge fan of the grill and most of my meals are meats and such.

I consume fish about once a week (usually battered) and that most likely negates the purpose, so the fish oil would probably benefit me. I think.

Plain old dizziness here and there may be coming from an ear.

I get sinus congestion sometimes (especially when the weather gets severe LOW pressures), and I use a Sudafed PE then just once a day in the morning, and it opens up the eustachian tube and allows for excess fluid to drain out. When fluid builds up behind the eardrum, it presses on nerves which cause dizziness.

There is a maneuver to open your ears too. Pinch off your nostrils and gently blow and listen for the clunk of the eustachian tubes opening. (sometimes it is a clear clunk sound and other times a cracking sound). If they don't quickly inflate that is a sign you are congested. Don't do this hard...as you can damage yourself.
But when I get congested my ENT suggested doing this once an hour until they stay more normally open.

http://en.wikipedia.org/wiki/Ear_clearing

I would say it is unlikely, but the alcohol may have brought something else that is usually dormant to the forefront.

Some research suggests that the amount required to sustain nerve damage is the equivalent of 3 beers daily for 5 years. Using this benchmark, I know personally hundreds of people who qualify, and indeed, most people are asymptomatic, they show deficits on nerve function tests but have no symptoms.

On Saturday I hiked 1.5 miles up a mountain, thought I was going to die, then hiked 1.5 miles down... :yahoo:

Not bad for a guy that used to be in a wheelchair. :D

1369 days sober.

I have fully recovered from the 3 mile hike up and down the mountain, but now my better half thinks we she should do that every weekend. I don't see her and I as a long-term thing....HAHA (kidding).

Anyway, I have been taking almost monthly trips to North Carolina delivering alcoholics to an 18 month program....what a fulfilling feeling to be able to give back to those that are just like me.

But, I have noticed lately that a slight numbness has been returning sporadically in my right pinky finger (I know, sounds minuscule) so I started watching my sugar intake again and eating more vegetables and meats. No more numbness for the past week. I am still thinking about this fish oil thing....

80F and sunny today....lets get outside!!

584 days sober
 

584 days sober! I have made a over a complete year of all holidays, etc. I have a birthday this month, so I can say I never had a drink at the age of 46! Small goals and stuff like that work for me. I am on 450 mg of lyrica daily, plus hydrocodone as needed. I recently went down to 300 mg of lyrica and that didn't work at all. I could only stand for a 10-15 minutes. I take 500mcg of b-12. Hopefully I can decrease the lyrica some day. I have regular checks of my blood sugar as well, so I keep tabs on that.

My neurological said the nerves heal at 1mm / day, so 3.5 years is what I am looking at.

Buying shoes is certainly an adventure. Zappos must hate me. I have googled, tried on many, etc.

I have dumped BP medication, cholesterol medication and gout medication. It's not all bad!

Scientists have studied this in depth, and concluded that thinking about fish oil does not increase health. ;):D

But on a serious note: I had slacked in my diet, started it up again in February, and I really do feel a lot better again. I don't know if it's the oil, the lack of sugar, the vitamins, or a combination of those, but it does work.

The diet slacking went very gradually. It's weird, you don't pay attention, and suddenly you realize a year has gone by and your diet was just not good at all and was becoming worse still. I can totally see how that could be the case with alcohol as well... you start of having one or two on occasion, and before you know it you are back to full blown drinking. It was a good reminder on how easy it is to slide into bad habits again.

That's fantastic! :) Also, this way you've had all the weird dates (year end, birthdays etc) sober so it becomes a lot easier the next year around.

I'm looking at 1058 days now, and next month will be three years. I must say we are racking up some pretty solid sober time in this thread. :cool: I'm spending a lot of time playing my piano these days, even the classical stuff (The Moonlight Sonata by Beethoven has an almost mathematical beauty to it). I love the instrument and the different types of music you can play on it.

The fact that it was paid for with money that didn't go to alcohol makes it double sweet.

In regards to fish oil.... Many studies, are done on nutrients and are poorly designed or looking for the wrong results.

The latest in fish oil failures is one recently that said fish oil failed to PREVENT heart disease.

But this is very difficult to prove anyway. Did they screen all participants for the DNA MTHFR mutation? I doubt it. This is a huge factor in many studies. And there are studies of severe head trauma responding to high fish oil treatments, recently.

Omega-3 fatty acids are essential, meaning we cannot live without them. If you don't eat them you have to supplement them. No ifs ands or buts. Fish oil is anti-inflammatory too, which is a good thing for your whole being, not just your heart.

Wow, I just read my post. I was very distracted and didn't see the edit button.

Wide-O, that's a great way to think about this thread, racking up sober time. ��

@okone1
If you were taking statins for cholesterol? You need to supplement CoQ-10 when using those. Statins cause nerve damage in some people. Some find that permanent. The CoQ-10 is to replace what the statin destroys in your own body. A new form that is more absorbable is available now...
Qunol. You can take 100mg a day of this new one... available on discount at Costco and Amazon. I'd take the CoQ-10 for a few months until your body recovers somewhat.

Just to be clear: I hope you noticed my play of words there ;). I am absolutely convinced about the effects of omega3 - especially as I have avoided fish my whole life due to a serious allergy (a real one, not something I invented; my throat completely closes up and I get a horrible rash inside my mouth minutes after eating some types of fish).

A good read for me was "The Queen of Fats". It made me understand that it's about more than just fish consumption. I don't think it's a cure for all, but I do think that our diets are lacking in a number of ingredients (omega3, magnesium, B12 for many etc) that can be supplemented in a safe and relatively cheap way (although good fish oil is rather expensive).

But just thinking about omega 3 will not be enough. ;)