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Old 11-08-2019, 04:49 AM #481
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So now I forgot a benchmark - 2700 days (2704 today actually). Time flies!


Sloppy is a good thing in this case. I really don't concentrate on it anymore when it comes to "my" recovery. But: still getting angry when I see how people and media pussyfoot around the alcohol addiction problem. They are fine to talk about heroin (it's "cool" in a perverse way) but alcohol... too close to home I suppose?


But let's not end on an unhappy note: I still think it's the best thing I ever did in my life, 2704 days ago. Not for pats on the back, no, just for myself.



PS: fasting (accidental in my case, busy, forgetting to eat, not really hungry) works wonders against the pain too. I've had 2 weeks of almost zero pain, even though it's a stressful time for me. Could be a coincidence of course, but always worth a try to not eat for a day or 2 (if you can manage, don't faint on me OK?)


OK, chase with Icehouse back on. Getting married, on the Bahamas no less! Tssk!
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Old 11-08-2019, 04:58 AM #482
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Quote:
Originally Posted by JTP1234 View Post
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.

Hard to answer: usually PN would start in your feet first and then go up if you don't stop the cause. The honest truth is even the best neurologists sometimes have to guess a bit. Our nervous system is incredibly complex, and it doesn't help that our brains play a part in deciding what we are feeling (or not). Even the "knots" along the way can generate their own pain as they expect a signal but don't get it etc. And those can be "retrained" it seems to "shut up".



I have zero pain in my calves, they do feel slightly numb, but all the real pain is concentrated in my toes (big toes the worst). I have very very light tingling sometimes in my fingers - but not bad enough to prevent me from playing piano or guitar or bass -, but no where else on my body at all.



As said, keep a diary, but be fully prepared to not listen to "us", as you really seem to have a different condition that isn't "peripheral".
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Old 11-09-2019, 08:53 AM #483
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Thanks Wide-O, super helpful. Will definitely take your advice.

Think you are right on the neuro guessing a bit, I pushed him pretty hard on everything. After the EMG was normal, pushed him on the SFN and skin biopsy. In his opinion, because this didn't really start and worsen in my feet/toes, the labs were fine, EMG was fine and the physical exam was fine, he felt like there isn't much more to do.

He just told me to come back in 6 months to a year if things don't get better or get worse! In the meantime I may see if my regular doctor can test me for any vitamin deficiencies (other than B12) and/or alergies.
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Old 11-10-2019, 07:44 AM #484
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Blood panels are always useful. I don't know where you live, so it may be easy for me to say, and expensive/cumbersome for you.


When I was in a bad shape and searching for answers, I had regular blood panels done, to also see trends, to see what supplements actually worked etc. But for me, if I call today, it will be done tomorrow morning and would have the results Tuesday for €2.00 Your mileage may vary.


I put the important ones in a spreadsheet to see over a full year what worked and what didn't. That way I ended up just taking D3, magnesium, and B12 - which is what my GP completely agreed with too, plus watching my diet. Not like a maniac, I still had my fries or whatever once a week, but my "bad cholesterol" was reduced to 1/3rd in 8 months (she had to look twice, but yep...). While eating quite a bit of healthy fats still (olive oil etc), but just going easy on the carbohydrates (and fast sugars, d'oh).



So still lots to try without stressing out too much. I spent 10 hours on my feet working on my car yesterday, using heavy machinery etc. No pain today (yeah, my back LOL). Age 57, so no longer a pup... So we learn to manage it, good days and some bad ones.
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Old 11-10-2019, 06:54 PM #485
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Quote:
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2700 days (2704 today actually). Time flies!or myself.

OK, chase with Icehouse back on. Getting married, on the Bahamas no less! Tssk!
I made it back to the USA (kicking and screaming) with my wife and we will settle back in to reality in the morning....grrrrr.

Looking forward to you passing me in the fast lane Wide-O!!!
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Old 11-21-2019, 07:02 AM #486
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Hello everybody,

Glad I found this forum!

I'll introduce myself properly soon, but I wanted to know if there's a sticky or post summarizing all the basics of alcoholic neuropathy?

I'd also really like to know what tests and such can rule out, or confirm the disease. As I always fear the worst, so it I'm hoping it's possible for a doctor to diagnose.

Thanks so much.
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Old 11-21-2019, 03:12 PM #487
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Hi grifter

Welcome to NeuroTalk .

As far as I know there is no single place where all of the signs of alcoholic PN are collected in one place if only because it varies between different people.

The older version of this thread (https://www.neurotalk.org/alcoholism...europathy.html), which was closed because it was getting too big, is worth checking out in this context.

All the best.
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Old 11-21-2019, 11:00 PM #488
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Hi grifter

Welcome to NeuroTalk .

As far as I know there is no single place where all of the signs of alcoholic PN are collected in one place if only because it varies between different people.

All the best.
Thank you, I'll check it out.

What about getting a clear diagnosis if the disease?

Are there tests that make this possible? Or does a doctor just make an educated guess?

Thanks again. (I'm freaking myself out )
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Old 11-22-2019, 01:47 AM #489
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This is very hard to say; often PN has no known cause(s).

In my case I stopped drinking more than ten years ago. My PN is in my hands only and has been stable/slowly decreasing since I stopped drinking.
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Old 11-22-2019, 02:07 AM #490
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Thank you.

Sorry, if I do have PN I'm sure it's from alcohol, but what I meant to ask is if a doctor can confirm that you have PN or not?

I'm worried about it perhaps being a long and complex thing to diagnose.

Or are there tests which can help give a proper diagnosis?

I also have health anxiety, so I'm making myself sick over it all.



I'll share my story when I return from AA. And again, I'm glad I found such a supportive place online. Big thanks to everybody here.
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