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-   -   My Journey with PN (https://www.neurotalk.org/peripheral-neuropathy/254129-journey-pn.html)

Ctman 08-18-2019 10:26 AM

My Journey with PN
 
Hello all.

I have just been diagnosed with "mild Neuropathy". We suspect it 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.

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 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.

echoes long ago 08-18-2019 12:40 PM

Quote:

Originally Posted by Ctman (Post 1278973)
Hello all.

I have just been diagnosed with "mild Neuropathy". We suspect it 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.

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 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.

it takes a while for nerves to regenerate even in the best scenario. it may take a few years so you have to be patient. you are starting a journey in the right direction. the good news is the cause of your neuropathy is one of the few causes that can get better over time if you provide your body with the best scenario. i would add 1,000 mcg metylcobalamin b12 daily to that supplement list.

Ctman 08-19-2019 09:14 PM

Quote:

Originally Posted by echoes long ago (Post 1278975)
it takes a while for nerves to regenerate even in the best scenario. it may take a few years so you have to be patient. you are starting a journey in the right direction. the good news is the cause of your neuropathy is one of the few causes that can get better over time if you provide your body with the best scenario. i would add 1,000 mcg metylcobalamin b12 daily to that supplement list.

Thanks...really appreciate the encouragement and advice!

Streetlegal 08-22-2019 05:44 PM

You might want to add fish oil to your daily supplements as there are some animal studies that suggest that it can help (and certainly do no damage). I'm using resveratrol each day, too--there is a thread on it here somewhere, I think. Again, limited animal studies suggest it might help.

Ctman 08-26-2019 05:09 PM

Quote:

Originally Posted by Streetlegal (Post 1279107)
You might want to add fish oil to your daily supplements as there are some animal studies that suggest that it can help (and certainly do no damage). I'm using resveratrol each day, too--there is a thread on it here somewhere, I think. Again, limited animal studies suggest it might help.


Thanks so much!!

Ctman 08-26-2019 05:10 PM

Quote:

Originally Posted by Ctman (Post 1278973)
Hello all.

I have just been diagnosed with "mild Neuropathy". We suspect it 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.

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 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.

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 09-17-2019 07:37 PM

Quote:

Originally Posted by Ctman (Post 1279233)
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....

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!!!

sdm11 10-01-2019 12:24 PM

Quote:

Originally Posted by Ctman (Post 1279762)
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!!!

Following. I have low level SFN (skin biopsy in normal range but very low normal), perhaps from alcohol use (wine lover). I've been drinking Nanny State (from Brew Dog), which is under 0.5% and a pretty good craft beer. My neurologist says that very minimal alcohol will have no effect in SFN, but I'm not sure. Anyone know?

JTP1234 10-12-2019 05:34 PM

Quote:

Originally Posted by sdm11 (Post 1280069)
Following. I have low level SFN (skin biopsy in normal range but very low normal), perhaps from alcohol use (wine lover). I've been drinking Nanny State (from Brew Dog), which is under 0.5% and a pretty good craft beer. My neurologist says that very minimal alcohol will have no effect in SFN, but I'm not sure. Anyone know?


My neuro told me I would be fine with "social" drinking, keep it very moderate. I think you will find a lot of folks on this board say any amount of alcohol makes it worse. Whether it just irritates the symptoms or actually makes it progress I don't think anyone knows. To me, logic would say small amounts of alcohol should not cause nerve damage, but I am not doctor.

JTP1234 10-12-2019 06:31 PM

Quote:

Originally Posted by sdm11 (Post 1280069)
Following. I have low level SFN (skin biopsy in normal range but very low normal), perhaps from alcohol use (wine lover). I've been drinking Nanny State (from Brew Dog), which is under 0.5% and a pretty good craft beer. My neurologist says that very minimal alcohol will have no effect in SFN, but I'm not sure. Anyone know?


Did the Neuro tell you to stop the wine completely? Ir did you go to the beer voluntarily?


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