Hi there,

New to the board and just wanted to check in to say I love what you guys are doing here, and to chip in with my story.

I'm 35, and for the last 4 months, I've been exhibiting symptoms of periperhal neuropathy. I first had symptoms of burning in my left foot for about 2 months, in the third month my right foot joined the party, and in the 4th month, my hands did too.

I'm sure many of you know what I'm talking about, burning that can hit at any time of day, usually more noticable when I'm resting, and can sometimes get intollerably bad. There have been some evenings when it has been so bad that I can't do anything else but dwell on the pain.

I have seen my doctor a number of times, he's sending me for an MRI. Blood tests came back negative for anything significant, save for a minor liver abnormality (which he doesn't think is worth pursuing). He always seems very laid back about the issue, and that doesn't enthuse me.

For a while I noticed that my symptoms were worst after eating, and, after a bit of trial and error, I started on a gluten free diet, and noticed that my symptoms lessened by about 50%. I told the doctor about the diet, but he jusst scoffed at the suggestion really

I've been following advice on this board and got some alpha lipoic acid and I've ordered some Jarrows Methyl B12, I also take omega 3, multivitamin, and vitamin b complex.

I'm mostly posting here because I'm worried, I keep wondering what my next symptom will be (nothing other than burning/shock like symptoms at the moment in hands/feet). I should try to be more positive though, and hope that it can be managed somehow. After all, I've at least managed to lessen the symptoms with the diet.

Be well
Kev

Welcome to NeuroTalk:

I'd say 50% reduction so quickly is very commendable.

Stay with your diet, and the other things and you may see more reduction.

I'd suggest you switch to newer better version of alpha lipoic acid.
R-lipoic stablized.

Here is a thread to explain why:
http://neurotalk.psychcentral.com/sh...light=blaylock

Some people have beginning impaired glucose utilization and this supplement can help with that in addition to helping the PN itself. So getting both actions with one thing is worth switching.

If you want to use up what you have to take it on an empty stomach and take at least 600mg a day.

R-lipoic is not in stores yet that I have seen. Esp the stabilized form which is much better absorbed.

iherb.com has it... at discounted prices. 100mg a day to start.
Also Amazon carries it too now.
Doctor's Best R-lipoic stabilized...be sure you get the correct type, as there are other R-lipoics out there that are not. (I was using one of those inferior ones by mistake myself!).

It takes a while on the GF diet to get substantial results. But since you already feel better, I'd stick with it indefinitely.

Impaired glucose tolerance does not show up on the common tests for diabetes. Only the long 4-5hr glucose tolerance test, which is not often done. So you could have impaired functions without really being high on the less complex screening types.
So it would be good to watch your sugar intake, and starchy carbs...and have lean protein, veggies, fruit and good fats in your meals. Some of the gluten free substitutes are high in sugar and starches, so watch your labels if you buy them.
There is a good brown rice pasta by Tinkyada, which is actually lower in glycemic risk than regular wheat pasta and tastes almost the same. Try to find that if you can.
http://www.tinkyada.com/

I did gluten free for 3 yrs, and found Tinkyada very good (actually the best GF pasta out there).

While you are here, please take a look at the Subforum where we have many threads and posts of interest.

--with her mention of a longer glucose tolerance test, I doubt, if you've been getting tested by a general practitioner, or even a run-of-the-mill neurologist, that you've had anything resembling a comprehensive work-up. (I'd be interested in the minor liver abnormality, though--I can say that small liver enzyme increases, particularly ALT and AST, that are less than twice "normal" upper limits on lab test ranges, are often associated with fatty infiltration of the liver, which can be exacerbated by alcohol; these are usually treated with lifestyle changes first--weight loss, drinking cessation, etc. This is quite common and often found in people who are overweight or have metabolic syndrome, which is a pre-diabetic situation.)

However, we shouldn't be too fast to attribute this to glucose tolerance problems, though a presentation such as yours is commonly caused by that. The gluten observation is intriguing--gluten sensitivity with or without frank celiac is absolutely associated with neuropathy and with other neural dysfunctions (though I don't expect a lot of GP's to know that--have you at least had the anti-gliadin and anti-transglutaminase assays done to check for possible gluten issues, which are also more common than most doctors think?).

I'd also say you should compare your test results to the famous Liza Jane spreadsheets, which were designed to be as comprehensive a list of tests for neural symptoms as could be thought of, and which also serve as a great way to track results over time:

www.lizajane.org


If you want to share your test results with us we'd be more than happy to take a crack at interpretation (and we're pretty good at that, if I may say so).

Thank you very much for the feedback MrsD and Glenn.

I will certainly try out the R-lipoic acid!

As for the blood test results, I honestly didn't expect to be second-guessing my GP so I didn't ask for a copy of the results. I shall contact them shortly and see if I can get a copy of them.

It's interesting what you say about metabolic syndrome. I am currently 191 pounds but I used to be 238 pounds about 5 years ago. I have been through a process of dieting due to high blood pressure, which I take calcium channel blockers for (which I can sometimes wondered may have something to do with this).

I have a home blood glucose test kit which was bought after a period of paranoia, maybe I could do a glucose resistance test, or just outright as the GP to do one. My fasting blood glucose was good though, although I know this can still mean pre-diabetes.

One of the reasons I came to gluten/celiac is that over the past 2 years I have been noticing increased bloating/IBS symptoms when eating bread (so I cut down on it), also someone in my family has celiac, and I hear it runs in families.

Thank you for the feedback though. I shall try to get the blood test results from the GP.

Kev

Hey Kevin,
Hi, new here too and from reading your post I see our stories are similar.
I'm 40, with PN that started without warning and I am prediabetic, which was found out after I too bought a glucometer after a period of paranoia
Also, I also lost quite a bit of weight in the months before the PN started.
Could it be that the losing weight disrupts whatever balance the body used to have about glucose handling and, say, now glucose gets higher because it has to be shared by a smaller body?

How are you doing these days?
Take care,
sUsY

I came across a website yesterday when I googled 'tuning fork peripherial neuropathy'. I mainly found a lot of info about diabetes and foot care.. one website said that the doctors standards are not correct and that people that are not considered diabetic according to their standards could in fact be diabetic and benifit from the diabetic diet. Interesting...I think I'm going to have to get my test results from my doctor.

Mrs. D,
When you wrote : "I did gluten free for 3 years, is it safe to say that you are now in a regular "with gluten" diet? Does it mean that while on gluten-free diet, you did not notice a significant effect on your pain that is why you came back to the regular diet?

I want to know because I am now on gluten free diet as an experiment. My IGa/IGg Gliadin Antibodies and Transglutaminase results are negative. I will see if my symptoms will improve while on GF diet.

Not that I am impatient but how long should one feel an improvement?

Thank you.

Yes, I did gluten free for quite a while. I did not see much PN effect for myself however. What really bothers me are the nightshade veggies and fructose. I discovered that later.

The lure of pizza was just too great for me! LOL

I don't eat heavily gluten now anyway. Still in that mode. But I do have some, now and then.

I had alot of GI problems, which I hoped would be fixed by gluten free. It turns out that it was fructose (sugar) all along.
The nightshade veggies are my burning triggers.


MSG is also a big culprit for me, burning wise.

Likewise, and I can relate. Gluten is not the culprit for us either; sugars & starches are, and starches are worse than sugar as far as weight control. Pizza is now a religious experience (Well, pizza is a religious experience anyway, but now it's taken on the onus of forbidden fruit as well... )

We have a family/household joke that chocolate (i.e. sugar) is "trans-fat" (i.e. transitory - not the recognized trans-isomer); if indulged once in a while, it moves on through and doesn't seem to have any lasting effect on our weight. Starches are different; they seemingly turn to fat on contact with tastebuds, and extreme care must be taken - it takes a week or two to work off a couple of slices of pizza....

Philosophically, we try to view it as aging (slowing) metabolism. Smaller portions, eat more slowly to savor, appreciate some things as treats rather than necessities... Self-delusion comes easier with age.

Also, sugar does have an effect on my PN symptoms - enough to give me reason to change my evil ways. If pizza is a religious experience, then I guess chocolate is a sacrament.

"All the things I really like to do are either illegal, immoral, or fattening."

Doc

Hello all,

Quick update on where I am.

Gluten free diet seemed to work at first, but after a few months the PN was still there. Went back on gluten for a test and the symptoms didn't change.

One of the remaining big differences between my 'worst' symptoms and now (manageable, but very much still there) is my mood/attitude. Stressing about PN makes the symptoms infinitely worse (or does for me anyway).

The health service has spent 6 months doing various tests to tell me that a) It's not diabetes, and b) It's not my back (seemingly, they ignored me when I told them I had PN in my hands too).

Now I have a referal to a neurologist, which is a step in the right direction.

I've tried so many suppliments over the past 6 months it's unreal. However, my experience is that, outside of stress management, little touches my condition of burning pains in my hands and feet.

I'm just sort of getting on with things in the meantime. What else can you do?

Kev