Well done and glad you enjoyed the camping trip :).

If I was a Citizen I would consider it ;)

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.

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.

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?

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.

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.

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...




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

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.

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:

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.

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!

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!

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

The bedside manners of neuros is... something that could fill books. But "hey, it's your own fault, stop drinking and enjoy a life of pain, it's outta my hands" pretty much covers it.


Alternatively they might want to sell you a very expensive treatment that may or may not work.


Sorry, not meant as saying there are no good ones, and we owe it to ourselves to keep looking for possible treatments etc. But it struck a nerve* because I have been there, and remember how utterly lonely & devastated I felt after my original diagnosis.


That small practice doctor is pretty much right though OAF, and I think it's very similar to what we've been saying here, no? It's a difficult message, because YES it helps a lot when you quit - it's absolutely vital - but NO we can not guarantee it will all go away. But we can manage it, at least it will not get worse (99.9% of the time), and you will notice tiny improvements.


There is a lot of work being done in the area of neuro-stimulation to block the pain. They are not there yet, it's not perfected yet, but there are some promising signs. So who knows where we are in 5 or 10 years.


Edit: that pun was absolutely unintended, but made me laugh when I re-read my post. ;)

2983 days sober.

Just got back from 10 days in Newfoundland where my balance was tested with the blowing rain, crazy winds and rocky terrain. No injuries!

Carry on with your conversation. ;)

Funny, my wife told me yesterday the weather was a bit funky in that area! (her colleague was there and was all but washed away).

Anyway, I see you are close to 3000, so I feel I’m losing terrain again. ;)

Just kidding, congrats!

Wide-O, you can do it!! :D

HI CTman. Yes, that is the spot. Weill Cornell is part of NY Presbyterian. It's a nice facility, but my experience with my Dr is that they diagnose you and prescribed meds and that's basically it. The last time I went was for a follow up EMG test. The result said that I improved in one area, but regressed in another. The suggestion was to keep doing what I was doing and come back in a year for a follow up.

Outside of lifestyle changes which include incorporating vitamins, I don't think there is much more we can do. I'm going to keep on pushing on.

I just don't fully understand how it progresses if you eliminate what is causing it. It makes no sense to me. What you guys have said (stop/drastically reduce intake coupled with healthier lifestyle) makes a ton of logical sense to me.

I had an appointment with a neuro, their initial read was it isn't alcohol related neuropathy because it is more in my calf area than in my fingers/ hands and toes/feet. They did blood tests and physical exam (reflexes, etc) and said all is fine.

I have an EMG scheduled for Oct 24th. What should I expext3, is this super painful, or just uncomfortable?

Yeah, I do a lot of entertaining for work, I took a month off from booze completely, but had a couple light beers on Monday (watching football) and a couple of glasses of wine last night at a work event.

I plan on really keeping it in check going forward. The comments on here about any alcohol making it worse scare me. Even though logic would say 2 beers shouldn't further nerve damage. I am confident I will never drink like I did in the past as my fear level is higher than at any point in my life.

I did not think the EMG was that bad...not painful, just uncomfortable.

Thanks Ctman, much appreciated.

Do you mind sharing what area improved vs regressed?

Oi! You passed 3000 without a beep.

That is simply not done! You get 500 days deducted!:mad::mad:

Seriously though, great stuff man. I totally by accident (I swear, what are the odds?) saw a certain before/after pic today, bloody hell...
CONGRATS ICEHOUSE!!!

:grouphug::grouphug::grouphug::grouphug:

It sounded like the nerves showed signs of reacting to the tests in one area more so than the first time, and in the other there was less reaction. So one area improved and the other regressed. That's basically what I had understood.

Which could even be within the margin of measuring tolerances, if the changes weren't really big. (these tests are really really finicky, talking really tiny voltages/resistances/time delays etc.) I mean, have your blood tested by 5 labs from the same sample... different results.



They'll get there. May take a few more years, but with stem cell technology... it's just a specific type of cells that need to be rebuilt along the path of (and around) the nerves.

Hmmm, it’s the 3rd... Icehouse?

Everything OK?

Oh yeah!

3015

I’m in the Bahamas on my Honeymoon! 😁

YOU LEFT ME FOR HER? :mad::mad::mad:




Well, that's a double congrats I would say! Way to go. ;)

This thread has been very informative so want to thank everyone for their input and perspectives.

So my neurologist basically came back with -

- the EMG/NCV were completely normal so large fiber nerves are intact

- i asked about a skin biopsy to test for SFN, and he said he did not think it would be worth going through that right now. His reasoning was that the physical examination (touch, pain, temp, vibration, etc) tests all were normal so unlikely there is any significant SFN neuropathy.

- we discussed alcohol as a potential cause of my symptoms and he feels it is less likely since my symptoms are not totally length dependent. I certainly have symptoms in my legs and arms, but my feet are mostly fine, I probably have more tingling in my hands than feet. And there was never a progression from my toes/feet up my legs, it all really hit almost at once, and i also have tingling on my back, stomach, forehead, etc.

So he basically just said to monitor things, don't over due the alcohol, and if symptoms progress to reach out and I could come back in and maybe do a skin biopsy, or additional testing.

So I guess that is all I can do for now. Kind of frustrating, but it is what it is I guess.

I had missed the “legs but not feet”, but yeah, that is a big sign it’s not your typical PN, your neuro is completely right.

As is his advice. It’s not “nothing”, there is clearly something going on, but not what we typically discuss in this section. So yeah, stay alert, healthy diet, easy on the alcohol & sugar (in all its forms) and try to keep track/find connections, as something makes me wonder: allergy? My wife has similar symptoms, not as bad, but puzzling, and it is allergy/stress related. She drinks as a “normie” but we know it’s not related to that.

Good luck & keep us informed!

Thanks Wide-O - I can't say it is totally not in my feet, I guess they tingle a bit now and again, nothing in toes at all though, and sometimes in the morning my feet and lower legs feel weird, not numb, but not normal. Would say my calf area is where it started with the tingling and some muscle twitching. But also in my thigh/hamstring area.

I guess one question I have, is in the length dependent symptoms, do your your feet continue to get worse as the condition progresses up your leg? He seemed to imply that I would have some sort of sensory loss, pain, more severe tingling in my feet if I was experiencing symptoms further up my leg.

Interesting you brought up the stress stuff, my father recently passed away and that has been rough, and I just had shingles too I think from just being worn down.

Icehouse, that is awesome, especially your honeymoon :D.