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After 4 years my PN is on the warpath....why?

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Old 06-02-2018, 07:36 AM   #1
DishRag
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Default After 4 years my PN is on the warpath....why?

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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Old 06-04-2018, 08:46 PM   #2
DishRag
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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 07:16 PM.
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Old 06-05-2018, 07:23 PM   #3
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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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Old 06-07-2018, 08:16 PM   #4
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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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Old 06-07-2018, 08:52 PM   #5
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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?
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Old 06-08-2018, 01:23 PM   #6
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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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Old 06-08-2018, 09:00 PM   #7
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The neurologist that did my blood work never went over the results with me. They drew about a dozen vials of blood total over two appointments so I would hope he did check B12. A couple of years ago I requested a copy of my blood work and never got a response. Next time I am in Knoxville I will stop in and wait while they copy them. If nothing else I will have a 2014 baseline to compare any future tests.

He did prescribe the Metanx and I remember him saying that it is used in diabetic neuropathy and can be beneficial in idiopathic....sounds like it was a educated guess that at least for me was correct.

As the neuropathy advances, damaging more nerves, is it possible it just takes more B12 to slow it down? Until that is when it gets to a point that B12 can no longer stop it?
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Old 06-15-2018, 05:36 PM   #8
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OP: A good friend with decades of neuropathy and mostly from statins and cancer burning surgeries..is feeling a lot of relief since taking Grape Seed Extract now for about 7 yrs or so..she took gabapentin for years and all it's side effects.

Personally I have some neuropathy from hip replacement surgery and in recent years staph infection in knee and the drugs and arthroscopic cleaning out the docs did.

I use Vicks salve on my feet night and day with socks, of course. I have been taking Grape Seed Extract about 23 yrs long before this damage.

There are so many possibilities for this nerve damage stuff.
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Most important supplement: grape seed extract
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Old 06-15-2018, 08:44 PM   #9
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Which grape seed extract do you use?
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Old 06-15-2018, 09:28 PM   #10
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Quote:
Originally Posted by DishRag View Post
Which grape seed extract do you use?
I've used many over all the years and like the price and quality of Olympian Labs 200mg capsules...Swansons has a good price and ebay too. I'm consistent as it has so many benefits.
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OA onset at 18, now 79. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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