Ok so I started taking benfotiamine again after reading this thread, I remember now why I stopped taking it, I took 300mg this morning along with a b-right capsule and then went back to bed for a few hours, when I woke up my arms felt numb and also my face was slightly numb and my back was slightly more numb than usual. It was most definatly caused by the benfotiamine but I also get this problem taking 100mg of normal thiamine, has anyone got any ideas as to why this may be occuring?I also got the same thing taking calcium and magnesium tablets. I just can't find anything on the net that would explain why the symptoms would get worse...

That's strange... I never heard of that. I don't take benfo (not yet at least) and maybe I was going to suggest a lower dosage but you are reporting the same symptoms when taking the lower dosage less potent thiamine. Maybe your body isn't reacting well with it. OR maybe it's doing such a good job that whatever your feeling might be your nerves repairing. However, you shouldn't assume the second one to be safe. I would actually suggest bringing this up with your doctor and having your thiamine levels checked. have you tried it maybe while staying awake to see if that changes anything? It would at least give you an idea when it's actually taking effect...

Have you had doctor evaluation for electrolytes? Blood work?

Calcium levels that are not normal give symptoms like that.

Also thiamine should not cause these subjective feelings.
I could not find a side effect to match your experience.
here is a typical example:
http://www.nlm.nih.gov/medlineplus/d...r/a682586.html

The one negative effect found in reports involve injection of high dose.

I have had some blood work done by my neurologist, not sure what was tested exactly but it came back within normal range. I had some more blood sent off for more tests and I am waiting for the results. I don't think I have had any tests for electrolytes, what should I ask?Are there any specific names for the tests?

When calcium fluctuates, there can be neuro symptoms. Numbness/tingling, etc.

If it gets really severely low, there can be cramping/tetany. Typically this is due to a malfunction of the parathyroid glands. Because this is not common, it is often
overlooked. Severe dietary restriction of calcium or taking drugs that affect calcium may be the culprit too.

What drugs do you take now? Anything there to suggest depletions?
You can PM me for privacy, if you like.

Checking back to give a status report on my benfotiamine usage. It's been a little over 3 weeks since I started taking it. I've been taking between 600 and 900 mg per day. Two every day at breakfast, two at lunch and two with supper (but sometimes I forget which is why I indicate sometimes my daily intake is only 600.)

My neuropathy is NOT cured. But I think the pain and discomfort is slightly less, enough so that I am definitely going to continue taking this. I have a little test I do wiggling my toes. My right foot has more neuropathy than my left. I usually can't feel my big toe touching the second toe on my right foot but that has changed a little bit and I do seem to be having more sensation at this point.

One interesting side note, I have had a pain in my back on the right side, about waist level for many years (though not as long as I've had peripheral neuropathy which is going on 14 years). I had an MRI and the diagnosis was that I had a "bad back", i.e. normal disk deterioration due to aging.

I had always worried the back pain was due to kidney problems (which are very prevalent in my family tree). The pain has been tolerable, much more tolerable than my neuropathy but it didn't feel to me like "back pain" and it has seemed to be getting worse.

Since taking the benfotiamine, this "back pain" has almost entirely gone away. And in reading more about benfotiamine, one of its "claims to fame" is to prevent kidney problems that can be a result of diabetes (which I don't have but I AM pre-diabetic.)

I'll check back again later but for now, it's a keeper in my (very substantial) list of supplements I take every day.

Here's a more recent study on the usefulness of this vitamin. It seems to me it was studies years ago, then dropped. Then studied again in 2005, then nothing more. But the results are for improvement not just in pain, but in nerve dysfunction. I'd be interested in learning more about this one.

http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

I have now been taking Benfotiamine for 2 1/2 months and think it is near the top of my list of supplements I wouldn't do without. As I reported earlier, I have increased the dosage from 150 mg per day (at breakfast) that I was taking earlier in the year and last year. Now I take a minimum of 600 mg per day and fairly often I take 1 gram.

I can't say positively that it has cured or is curing or is providing permanent relief for my PN which I have had for 10+ years. I think there has been improvement because of a "toe wiggle" test I do periodically but it is not really major. But could be a slow improvement which is certainly better than none.

I do want to stress that I still have numbness all the time and low levels of pain and discomfort, but the more severe pain seems to have definitely lessened. And I just walked on my bare feet and didn't feel like I was walking on broken bones (in the ball of my feet) but since I have a fair amount of numbness, I'm not sure I'm a good example to test for this sensation.

But what I really like about it is that it seems to work like an aspirin. If I have pain after some strenuous walking (for me that means the grocery store) and I take a couple of capsules (300 mg), my pain is gone within 30 minutes. Also, if I take the capsules before I do any strenuous walking, it keeps the discomfort to a bearable one. My doctor doesn't want me to take more than 80 mg of aspirin per day and I'm trying to stay off neurontin so as a minimum I consider the benfotiamine as a great non-toxic pain killer but it probably is a lot more. I just can't say for sure yet about the long term.

I can't say enough good things. I walked 3 miles with my husband last Saturday, something I have done before but I usually would be down for the day in bed afterwards. Not this time. Taking the befotiamine before and then also afterwards helped me keep on going.

I'm now starting a walking program of 30 minutes every other day and I hope to increase it to 30 minutes per day. I wouldn't be able to even think of doing this without the befotiamine.

And yes, I'm still taking B complex 100 as well as methyl sublingual B12 as well as Folic acid and also some biotin. My list of supplements is huge but the Benfotiamine is near the top (Below the Vitamin C, glucosamine, MSM and B12).

This is the last of my status reports since I am totally sold on this supplement. I have no financial connection with either of these retail vitamin stores but wanted to give links to what I use. The capsules are handy. The powder I cap up in large gel caps where it is almost 1 gram per capsule. These I take before I do anything strenuous. Bottom line, don't expect anything unless you take a major dosage. For me, 900 mg per day (or 6 capsules, with 2 at each meal) is what I aim for as a norm.


http://www.iherb.com/ProductDetails....=1&pid=42&at=0 (150mg per capsule, $15.00 for 120 capsules)

http://www.easycart.net/BeyondACentu...mins.html#1170 (powder - 30 grams per bottle, $15.00 per bottle)

thanks for the update....i take 600mg a day also......im going to try it for when i have additional pain and see how it works.

PN patients need to try supplements to get the nerves to heal.

It takes TIME to see results as well. And your post illustrates that beautifully.
It took time to become numb/and have pain. So it takes time to restore.

It has long been known that the peripheral nervous system can heal itself.
This fact remains in medical textbooks. But sadly those same books do not
share HOW.

Are you taking omega-3's ?