Hi all -

I am experiencing a rapidly progressing PN in my feet and I feel like it's starting up in my hands, too. I am in the process of seeing a neurologist and a rheumatologist (my rheumatoid factor was positive)

Anyway, in the mean time I am supplementing with all the recommended supplements hoping that I can do some damage control. I can't say I have had much success with supplements but that's probably because the underlying condition causing my PN isn't yet known.

Here is my main question, does a higher body weight require a higher dosage of these supplements? I am overweight (but losing weight) and I just am not sure if I am taking enough of ALA, Benfotiamine, fish oil, etc. I've been taking 600mg per day of R-ALA, which seems like it should be enough but nothing is really happening. In fact, my burning and stinging is worse than ever.

Any thoughts or suggestions?

Thank you! ~Kari

Is your R-ALA the stabilized form? If not, and it is the older type, (not solubilized), you are probably not absorbing it well.

Have you had the DNA testing for MTHFR genetic errors?

Hi MrsD, thanks for your reply. I was hoping you would respond as you seem to be a wealth of knowledge on this website!

The R-ALA I am taking is stabilized, according to the website. It is the Jarrow brand. I am considering switching to Doctor's Best brand, it seems to have better and more reviews.

I have not be tested for that genetic defect. Who would I speak with about conducting such a test? Would either the rheumy or neuro be able to do that? I'm not too familiar with the gene, but just spent a few minutes reading about it. I am anemic (however it is improving with iron supplementation) and I do have high blood pressure that I am on medication for. I have an elevated c-reactive protein and sed rate, implying inflammation.

I guess my ultimate question is, what good are the supplements if I don't know the root cause of the neuropathy? I have had two A1C's at 5.6% and a fasting glucose of 94, both of which I think are elevated, but I can't get a single doctor to agree that I could be pre-diabetic and that my neuropathy could be stemming from high blood glucose. And now with this positive rheumatoid factor, I'm torn between wondering if the PN is from an autoimmune disease.

I guess I wont know until I see the rheumatologist and the neurologist anyway, but I have 3 weeks until both of those appointments and I am so depressed and anxious over what is happening to me.

Thanks for your answer.

I think 600mg of the stabilized R-ALA is too much.

100mg-200mg a day is enough for most people. That 600mg suggestion is historical and pertains to those using the old mixture type of ALA called racemic.

You can get a DNA test from 23andme, from MTHFR.net and some other OTC internet companies. It will show if you have the errors, that cause poor methylation in the body. (this you have to determine yourself from the SNPs they give you, as the FDA forbids these companies from "interpreting" medical stuff to the clients.

If you don't have low levels of nutrients like B12, folate, B1, B6 or copper, supplementing is not likely to help much.

Lipoic acid is mostly for those with insulin resistance, or pre and regular diabetes. Benfotiamine is for people who cannot handle carbs or get sick or drink too much alcohol. Thiamine can become low in some people and in the past was actually a treatment for PN.

Those with autoimmune factors, have PN damage due to antibody attacks on the nerves. So antioxidants are thought to be helpful for those people. This is where diet helps...and is similar thinking to those with MS who follow Terry Wahls' plan of eating mostly veggies and fruit.

PN symptoms can arise from food intolerances... gluten, nightshade veggies, or fermented foods which high histamine content. I have a histamine thread in the subforum above.

It gets really complicated therefore to get straight answers anywhere in the medical arena. And there are few doctors who will admit that they gave PN causing drugs to their patients causing a toxic PN.

MrsD, thank you very much for your response. I can't even tell you how much I appreciate it. I've never felt so defeated before and I feel like I am at just at the beginning. I better find some strength somewhere because I will be needing it.

Anyway, I don't have any deficiencies other than iron and vitamin D. I am supplementing both. Is there any significant correlation between vitamin D deficiency and PN?

I will try eliminating foods. I've been reading about the nightshade food group. Sort of depressing because I love potatoes, but I love my feet not burning more, so it's worth a go. I will also eliminate gluten. I tested negative for celiac, but I have been reading you can still have a gluten intolerance even with a negative celiac test. Any credibility to that statement that you know of? I've also read that nightshade foods are bad for rheumatoid arthritis.

And perhaps this question is a bit "TMI" but is there any evidence of symptoms worsening before or during a menstrual cycle? Trying to put together some pieces of the puzzle.

My doctor told me to quit taking B12 because my level was 1870+ after supplementing. I did quit for a week but I feel like symptoms got worse (could be all in my head) so I started up my supplement again today.

Thank you again for everything. I will check out that website for having the genetic testing done. I'd like to have as much information as I can because I refuse to let this take over and not do everything in my power.

You probably won't find any doctor who will say it's the cause, and it well may not be, but if your glucose is spiking high when you eat carbs, it's certainly not helping matters. High blood glucose is a definite known insult to nerves, although they can't seem to quantify it.

One thing is for sure...improving your diet by cutting back on sugar and carbs in general is certainly going to do you no harm, and may even help you avoid getting that pre-diabetic or diabetic diagnosis some day.

David here sent me this link last week...

The WHYs behind the Autoimmune Protocol: Nightshades - The Paleo Mom

It is very helpful for this discussion.

If you suspect an inflammatory cause of your PN... fish oil
or krill oil would be something to try.

You're totally, totally right. Even if it isn't the cause for the PN, it's still good to avoid. I've been eating a low-carb diet for a few weeks, as I am trying to lose weight anyway.

Today I got a blood glucose test monitor thingy and I tested my sugars throughout the day and quite honestly, I almost hope to never become diabetic because pricking my finger might as well have been the literal end of me. I am such a baby! Some curse words slipped out a time or two. lol

But my numbers were pretty good. My fasting morning glucose was 78 today. An hour and a half after eating breakfast, it was up to 92. Before lunch I was sitting at 88, an hour and a half after lunch I was up to 97, but I did eat more carbs with lunch. So I guess I will keep trying for a few days and get different numbers trying different foods, but I don't think I have diabetic neuropathy.

Thanks for your advice though, you are right on the money.

Those numbers are beautiful. Very generally speaking, you want to keep your post-meal glucose under 120 or 140 at the most. Despite A1C and fasting glucose numbers similar to yours, if I eat a high carb meal, I can spike into the 190s and not come back down to good values for four to five hours.

I'm definitely not diabetic, though. I just checked my blood sugar, and it was 70...which is getting a little too low. My body apparently doesn't understand the concept of moderation.

thanks for the response Janie. I know your neuropathy is idiopathic, but do you ever suspect blood sugar played a role?

Also, do you know if R-ALA helps neuropathy that isn't caused by high blood sugar? I read conflicting things about that.