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Old 01-03-2015, 09:20 PM #381
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Thanks for the warm welcome guys. I have been lurking here for a couple years now but wasn't ready to quit and join your club. I am ready. It takes what it takes and I want to try to salvage my life and hopefully my health.
I do feel compelled to mention something I read last night on a tread posted by MrsD. It made reference to studies that suggest benfothiamine is not recommended for those that are at risk for cancer. I am a cancer survivor and this was disappointing as I have been taking it for a couple months and it seemed like my best chance of improving my mobility. The research suggested that if there are cancer cells present the benefothiamine will feed the cells, much like sugar does I guess. Anyway I believe everyone has cancer cells looming and just waiting for low immunities to set the disease in motion. In my case it was major drama and stress along with not eating and heavy drinking. MrsD, are you aware of the article I am speaking about? Am I representing the content correctly? That is what I took away from it so sadly I will not be able to take the benfothiamine as I am high risk given my medical history.
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Old 01-04-2015, 09:32 AM #382
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Thanks for the warm welcome guys. I have been lurking here for a couple years now but wasn't ready to quit and join your club. I am ready. It takes what it takes and I want to try to salvage my life and hopefully my health.
I do feel compelled to mention something I read last night on a tread posted by MrsD. It made reference to studies that suggest benfothiamine is not recommended for those that are at risk for cancer. I am a cancer survivor and this was disappointing as I have been taking it for a couple months and it seemed like my best chance of improving my mobility. The research suggested that if there are cancer cells present the benefothiamine will feed the cells, much like sugar does I guess. Anyway I believe everyone has cancer cells looming and just waiting for low immunities to set the disease in motion. In my case it was major drama and stress along with not eating and heavy drinking. MrsD, are you aware of the article I am speaking about? Am I representing the content correctly? That is what I took away from it so sadly I will not be able to take the benfothiamine as I am high risk given my medical history.
I found two things you can read in depth:

http://lpi.oregonstate.edu/infocenter/vitamins/thiamin/

and
http://www.ncbi.nlm.nih.gov/pubmed/23893925

Other nutrients have been suggested also to fuel cancers. Most recently folate joined the list. Cancers use nutrients to grow like any other tissue in the body.

You can get tested to see if you are low in thiamine. This vitamin (and benfotiamine) get very low in alcoholics, diabetics and those using diuretics.

If you are super worried about this, then don't use it. But I would at least get some blood work to see if you are really low.
You'll see in the two links that really low thiamine levels due to cancer are still treated with thiamine today. The connection therefore is not cast in stone. You could just use it for the recovery period of the drinking and once on your way, you can drop it if you like. As the Pauling link points out...low thiamine has serious consequences for the brain and heart/circulatory system, however.
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Old 01-04-2015, 10:56 AM #383
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All good thoughts MrsD. Thanks.
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Old 01-12-2015, 07:35 PM #384
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Update on me: Still taking all the recommended vitamins religiously. My fingers are getting worse though. Tonight I sliced my thumb while using the large slicer on a grater to slice potatoes, although I don't think it was a result of my finger numbness, I was just in a hurry.

The fingers are bad but hey, at least I can still type at this point in juncture!

I broke down and made a doctor appointment. First one will have to be with a general practitioner, in early February. The city I live in has very limited neurologists (with terrible reviews) so I will have to drive a couple hours to one of the nearby cities (assuming the GP will recommend seeing a neurologist as a next step). I have a lot of fatigue lately so I did more research and that almost points towards MS - but I doubt it, not with my 24/7 PN symptoms and my history of heavy drinking. From my understanding, MS symptoms come and go, and aren't constant like they are with alcoholic PN.

We bought a rowing machine which is great - I can get exercise, both arms and legs, without having to worry about my stupid numb feet slipping, or doing something like tripping. (I am petrified of trying to walk on a treadmill because of that!) Still scared every time I get in the car to drive, that my feet will quit working like they did before. I drive only a cautious few miles each week, only to get groceries. Not to mention that I drive like a grandma now (as well as walk like one).

So, that's my update. I still have "good days" and "bad days". Today I am feeling pretty good, the extremities are moving well enough to get laundry done and use the rowing machine and cook a nice dinner and type this message! I am relieved, because the weekend was really a bad two days and I thought I had taken a decided turn for the worse.

I'll check in once I get some news about whatever testing they may do. I haven't been to a doctor ever since the symptoms started, almost 2 years ago.

Last edited by WannaGetFeelingBack; 01-12-2015 at 08:20 PM.
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Old 01-22-2015, 11:44 AM #385
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I took my kids skiing (actually they are 23,21, and 18, not actually kids, I suppose) and bottom line: a good time was had by all, and I overcame my concern about PN and skied my own 62 year old body down the bunny hill a few times and loved it. I was so excited. Hadn't been on skis in 30 years.

Well, I got home a few days ago, and my PN symptoms have been as bad as they have ever been. Which is not disabling, by any means, but still, this stuff baffles me. I was so happy I could ski and was/am looking forward to more trips this winter. But I have no idea (too much exertion??) why my PN is worse.

I guess the point of this post is that if you sometimes go thru bad stretches, or maybe even good ones, that don't make sense to you, you are not alone. Hopefully I will be back to what qualifies as "baseline" in mi casa and ready to take on another hill, soon.
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Old 01-23-2015, 08:21 AM #386
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I guess the point of this post is that if you sometimes go thru bad stretches, or maybe even good ones, that don't make sense to you, you are not alone. Hopefully I will be back to what qualifies as "baseline" in mi casa and ready to take on another hill, soon.
I find that I can't do what I used to do for the same amount of time. I get tired quicker, the body just does like the 'stress' much anymore.

But, I applaud you for taking the risk, taking the chance and going for it!

If we ever get snow this year, then I will probably try skiing myself, but it's not looking good so far
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Old 01-23-2015, 03:00 PM #387
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I find that I can't do what I used to do for the same amount of time. I get tired quicker, the body just does like the 'stress' much anymore.

But, I applaud you for taking the risk, taking the chance and going for it!

If we ever get snow this year, then I will probably try skiing myself, but it's not looking good so far

Yes, it has been downright balmy since we got back, Icehouse, we picked a good time to go. Thanks for our comments, it is so helpful to get others ideas on this stuff. I still don't think I have recovered and I didn't even do that much, at least it didn't seem like it at the time. But I suppose just the awkwardness of ski boots would be enough to make these old nerves rebel. Hope for snow your way!!
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Old 01-26-2015, 07:22 AM #388
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bad stretches, or maybe even good ones, that don't make sense to you, you are not alone.
Very much this. I can not figure it out, and have stopped trying to. I can go from feeling top of the world feet-wise to "darn, that hurts bad" overnight. The "bad" is still continuing to be "less bad", so there is improvement still, but it's very confusing and sometimes disheartening.

My last big project was turning a naked attic into a cosy library. Cleaning, drywall, flooring, electricity, concrete fixing, painting, cabinet making, moving the books... everything. All upstairs, so I must have done those stairs hundreds of times. You can't do that if the PN is bad, I'm sure you agree. Yet some mornings I still wonder if I'll even be able to get up and walk to my desk.

So when people ask me "How are your feet" I can only reply "it depends". Very confusing.
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Old 01-26-2015, 07:48 AM #389
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I took my kids skiing (actually they are 23,21, and 18, not actually kids, I suppose) and bottom line: a good time was had by all, and I overcame my concern about PN and skied my own 62 year old body down the bunny hill a few times and loved it. I was so excited. Hadn't been on skis in 30 years.

Well, I got home a few days ago, and my PN symptoms have been as bad as they have ever been. Which is not disabling, by any means, but still, this stuff baffles me. I was so happy I could ski and was/am looking forward to more trips this winter. But I have no idea (too much exertion??) why my PN is worse.

I guess the point of this post is that if you sometimes go thru bad stretches, or maybe even good ones, that don't make sense to you, you are not alone. Hopefully I will be back to what qualifies as "baseline" in mi casa and ready to take on another hill, soon.
I have to wonder if you have compression or inflammation in your knees. Skiing is really tough on knees.
Try some magnesium lotion on your ankles and knees and see if that helps.
It can do wonders for nerve pain. A little goes a long way.
Rub in about a nickle's worth on both knees once a day.
WalMart, Walgreen's, and online Amazon carry it for a very affordable price.
http://www.walmart.com/ip/Morton-Uns...fl-oz/23711655
Not all stores carry it yet, as it is relatively new.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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Old 01-26-2015, 05:28 PM #390
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I have to wonder if you have compression or inflammation in your knees. Skiing is really tough on knees.
Try some magnesium lotion on your ankles and knees and see if that helps.
It can do wonders for nerve pain. A little goes a long way.
Rub in about a nickle's worth on both knees once a day.
WalMart, Walgreen's, and online Amazon carry it for a very affordable price.
http://www.walmart.com/ip/Morton-Uns...fl-oz/23711655
Not all stores carry it yet, as it is relatively new.
Thanks Mrs D! I shall add it to my shopping list for tomorrow.
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