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06-02-2018, 06:36 AM | #1 | ||
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Junior Member
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Forgive me, my first post will be a long one. I have been reading and researching here and on other sites for a few years. Ok, here is the back story:
Diagnosed with Idiopathic PN 4 years ago by a neurologist in Knoxville. They found it while doing pre-surgery testing for carpal tunnel. I'm 60, I am not overweight, have never approached diabetes and have not had any medical problems except seasonal allergies. I don't take any prescription meds, nor do I use any illegal drugs. I was always blue collar and worked outdoors. Hobbies are/have been hiking/backpacking, running, horseback riding, boating, motorcycles, hunting/shooting & wood working. Currently it's hiking, playing tennis, on and off road motorcycling(usually about 15K miles a year). We heat with wood, so I cut and split about 3 cords a year.Since 2010 I have built my own log home, a shop and several out buildings. We are on 100 ac and the hobby farm includes cows, chickens and horses. I did chew tobacco for 25ish years(quit cold turkey 2 years ago) and I enjoy my end of day drinks, usually beer and anywhere from 2-5 bottles a evening. Mixed drinks are less than 25% of my alcohol intake. I would consider my lifestyle "active". After the PN diagnosis I was put on Metanx. My symptoms were the common slight numbness on the ball & big toe of the right & left Sgt Hulka(big toe): I can't post a link yet, but go to youtube and watch the clip from the movie Stripes..." Sgt Hulka and the Big Toe" I know this is not a laughing matter, but comedy and laughter can keep one from going insane and is a proper temporary escape from reality for me. After the Metanx, I had no PN improvement or advance. After looking it up and finding out it was B12, I tried the Costco Super B12 supplement and found it also worked the same as the much more expesive Metanx so I switched. My PN lay relatively dormant for 4 years. Then, two weeks ago it just went off the reservation. Almost overnight the numbness has spread approximately 50% on both feet. I get a "flushing" feeling from toe to knee accompanied by what feels like a temperature change. So far, no pain, but if I leave an ankle in one position too long(as in driving or sitting) when I stand up it really hurts and I have to limp a few feet before it starts to work again. I attributed that to Mr Arthur Itis(the guy is a **** hole), but now I am not so sure. I have cut back my alcohol intake. The neurologist told me 4 years ago that there was no lifestyle change that would make my PN worse(I now know he was dead nuts wrong). Last night I had a couple of IPA's and instant "club foot" that is still here today as I type. It looks like a cold turkey is in order for me on my alcohol, but to be honest I will miss it. So, nothing has changed in my intake or activity level in 4 years. Why would my PN now make such a sudden and abrupt flanking cavalry charge? I still am fortunate to not have pain like many of you here, but I think it's inevitable. Only past known PN trigger for me - Salt.....I have never in my life added salt to food. But, I am from New Orleans, and I love spice. Two years ago we went down to the crawfish festival. The mud bugs at the festival were so salty I could hardly eat them. The next day my PN flared up and stayed that way for a week before calming down. I have ordered Methyl B12, Benfotiamine and Alpha-Lipoic and will start on them in a day or two. Any other suggestions are welcome. |
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"Thanks for this!" says: | Joe Duffer (07-02-2018) |
06-04-2018, 07:46 PM | #2 | ||
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Junior Member
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No comments or suggestions?
It's ok, most of us will never get any answers because the disease research seems to be in it's infancy. I would love to volunteer for a clinical trial on PN, but can't seem to find one. I will say that the Methyl B-12, Benfontiaine, Alpha-Lipoic Acid and Metanx seem to be calming everything down after a couple of days...it is promising and I will update. I don't expect any reversal, just looking to stop it's forward progress. Is there a thread running on known triggers? If so I have not found it yet. Last edited by DishRag; 06-05-2018 at 06:16 PM. |
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06-05-2018, 06:23 PM | #3 | ||
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Junior Member
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Yesterday I drove 10 hrs, and today I did some farm stuff - fencing and moving some heavy equipment around. The vitamin cocktail that I am taking seems to have arrested the numbness, and I am no longer getting the 'flushing' feeling up to the knee and back down.
Whatever advancement damage seems to be done for now. I still have no idea of why it went on the offensive. Do any of you have "leaps" in PN followed by periods of idleness/inactivity? Just wanting to know what to expect in the future other than the 'known' so far...."expect the unexpected". |
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06-07-2018, 07:16 PM | #4 | ||
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Junior Member
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Well if I can't anyone to respond...maybe I can get y'all to at least smile?
Stripes - Sgt Hulka and the Big Toe - YouTube My normal tricks to embed the video failed, so if anyone can fix that it is much obliged.......... |
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06-07-2018, 07:52 PM | #5 | |||
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Grand Magnate
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My PN is in my hands only and is almost certainly a consequence of when I used to abuse alcohol.
Perhaps you could consider decreasing your alcohol intake?
__________________
Knowledge is power. |
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06-08-2018, 12:23 PM | #6 | ||
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Member
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The fact that things got better (Twice) with the Metanx and extra B12 hints that you could have issues with absorbing B12 or folate. Your body can store quite a bit of B12, so if you had the "tank topped off" you could have gotten by for a few years before it dropped to a dangerous level again. Did you ever have B12 testing done?
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