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Old 10-01-2019, 03:29 AM #461
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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.
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Old 10-02-2019, 06:05 AM #462
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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.
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Old 10-02-2019, 10:52 AM #463
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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!
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Old 10-02-2019, 12:03 PM #464
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Anyway, I see you are close to 3000, so I feel I’m losing terrain again.
Wide-O, you can do it!!
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Old 10-03-2019, 05:33 AM #465
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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
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.
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Old 10-03-2019, 10:15 AM #466
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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?
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Old 10-03-2019, 11:30 AM #467
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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.
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.
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Old 10-15-2019, 08:09 PM #468
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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?
I did not think the EMG was that bad...not painful, just uncomfortable.
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Old 10-16-2019, 05:06 PM #469
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I did not think the EMG was that bad...not painful, just uncomfortable.

Thanks Ctman, much appreciated.
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Old 10-21-2019, 11:10 AM #470
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Originally Posted by On_A_Freeway View Post
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.
Do you mind sharing what area improved vs regressed?
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