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-   -   New to PN and the site, anyone know the odds? (https://www.neurotalk.org/peripheral-neuropathy/178174-pn-site-odds.html)

Brue 10-17-2012 04:24 PM

Quote:

Originally Posted by Icehouse (Post 923449)
I am that fellow that MrsD referred to above. I am an alcoholic, albeit a sober one. I drank for about 20 years daily, now I am 440 days sober. I pretty much went from a healthy average sized person to a drunk in a wheelchair. If you follow the thread on that you will see that 3 things worked for me. One, I quit drinking and started eating. Two, I forced myself to exercise a little bit a day to keep the legs moving and three, I took MrsD advice and went on a vitamin regime of:

Centrum Men Under 50, Multivitamin, 200-Count Bottle
Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Jarrow Formulations Jarrow B-right Complex, 100 Capsules

I am now walking without my cane most of the time, can work FT and I feel great.

Now, I dont know what percentage of PN sufferers beat it, but in my case I pretty much did. I will most likely have many lingering effects over my lifetime, but where I am at today beats the hell out of where I was 1.5 years ago.

Stay positive, force yourself outside and you have a chance! I am walking proof of that.

Ice in VA

Is that what you take? I've been taking B-complex, B-12, B-12 shots. I'm not having much luck as far as improvement goes. I guess I'll have to reach out a little further and try the benfotiamine. And the Jarrow mixture. I'll have to take the Centrum over-50 though!

That's a good story, bro. I've got about 9 months off the bottle. At least my symptoms have stabilized and not spread, I can say that much, I've got the sensory PN in my feet and it hasn't affected my motor skills, but it's atropied my leg muscles and caused all kinds of unreal pain in my feet. I will say that the doc got me on a time-release 24 hour 200 mg neurontin pill and that's helped A LOT. Plus the gabapentin. Glad you're working full-time, I've had my worries about the same thing.

Icehouse 10-17-2012 05:35 PM

Quote:

Originally Posted by Brue (Post 923481)
Is that what you take?

Um, yep. Had to get a couple refills, but I think I started back in March...I get everything via Amazon...

I had the tingling feet, zero balance, couldnt stand or walk, numbness, but I had no pain...none at all.

I also have a drink called 989 everyday...its full of good stuff and all natural.

Thefarouk 10-17-2012 06:37 PM

Thanks, Icehouse.

Like you, my symptoms include tingling, numbness, lack of balance, inability to walk normally... same tingling/numbness in my hands, which is impacting my typing... and since I cannot feel my feet, I keep missing the brake pedal, so I'm not safe to drive ATM either... as a software engineer, I depend on being able to go to/from work, and type at a high rate, so this condition is really threatening my work - which is part of why I'm so anxious for some idea of whether I'll get over this or not.

(warning: pontification coming) The reality is, instead of focusing on the future obsessively (which creates my anxiety), I am using cognative therapy to try to retrain my brain to focus on today. Whatever happens with the job is beyond my control at this point - and reminding myself of that helps me stay focused on today instead of tomorrow.

I'll be asking my doctor to either test for, or produce from my records, levels for B1, B3, B6, B12, A, D, Thyroid, Pantothanic Acid, Biotin, and heavy metals. I'm also going to ask why we did not do an EMG, and suggest we should consider an EMG, conductive testing, and perhaps a nerve biopsy.

In the mean time, I've made new friends here, which is also helpful, as I live a very independant and isolated life and have almost no support group. Thank you again, all.

Peace and joy,

/Bob

Icehouse 10-17-2012 07:31 PM

Well, luckily you are in IT like I am, and telecommuting is an option :) I went from walking to a wheelchair overnight, then to a walker, then to a cane fulltime at Christmas ...now I use the cane sporatically. I find stairs with no railings a real challenge and I really cant walk more than 2 miles without being exhausted.

I really do hope you get better, I have been there and done that and its no fun.

Thefarouk 10-24-2012 01:13 PM

B12 was 234 in the hospital, we're getting new tests done on a much broader spectrum tomorrow. I was lastr in the hospital in August so who knows how much the value has changed since I've been on B12 therapy. Also a follow up visit with my neurologist, but I need to find a new one because this guy has one of the worst ratings I've seen (59/100).

Sensation still improving, albeit slowly - still cannot feel the bottom of my feet so I keep missing the cars brake pedal - will have a hand control installed. Typing still sucks.

Will provide the updated numbers when they're available. Thank you again for all your support.

Peace and joy,

/Bob

Thefarouk 10-26-2012 02:03 PM

Wow, well the lab was an interesting experience. We scheduled 13 factors for testing, they drew 15 vials from me. Never had 15 vials of blood drawn in one sitting. Given the season, maybe I just fed a few vampires :eek:

/Bob

mrsD 10-26-2012 02:06 PM

If you are currently taking vitamins, and getting blood work done, the results will not reflect much. Often they show false highs. I hope you discontinued all vitamins 7 days before the testing.

Thefarouk 10-26-2012 02:29 PM

Quote:

Originally Posted by mrsD (Post 926193)
If you are currently taking vitamins, and getting blood work done, the results will not reflect much. Often they show false highs. I hope you discontinued all vitamins 7 days before the testing.

Son of a... :mad:

Nope, doctor didnt say a thing about it. And it isn't like he didn't know - in fact, I brought in my new multi-vitamin and omega supplements during my last visit, when we ordered the tests. Making me think he wants me to see high numbers so I'll stop bugging them about it.

it was even a fasting test, so I went 12 hours without food. Well, at least its better to know. Thanks again, MrsD. Will look at the numbers and post them here, and then figure out whats next.

At this point, my recovery has really slowed. I haven't felt much of a change in the tingling/numbness in my hands and lower legs for several weeks. Walking is a bit better, endurance is up - mostly because I'm "doing" those things - got 1/4 mile in on the treadmill this morning, and I walk on the treadmill every day except Sunday.

/Bob

mrsD 10-26-2012 02:33 PM

I'll be waiting. ....

Thefarouk 10-28-2012 12:30 PM

Which is of interest to me as I am a warfarin patient (Afib '2010, has not responded to any attempts to normalize, including cardiovert).

So now I have to wonder if my warfarin is having an affect on my PN...

/Bob


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