New 35yr old poster - My experience
 

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. ;)

As Mrs. D hints at--
 

--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

Hello Kev
 

Welcome to Neuro Talk. You found a good place to seek answers and comfort. I hope you get alot of people who will talk to you about the NP. I do know the pain from that can be very intense. Your doctor sounds a bit too laid back and not quite paying enough attention to you. If they themselves could feel that pain just for a minute, they would be a little more compassionate. You will find good advice here from those dealing with this disorder. I really wish you all the best. This forum did alot to relieve my own worries more than once. Take care, ginnie

Welcom to Neuro Talk. I agree with ginnie this forum has done a lot to alleviate many of my worries. It sounds as though your primary care physician has not referred you to a neurologist yet. I would suggest that you request a referral if you need one. If not try to see if you can find one close to you. It is always nice to know someone who has been to them but if not look on the web. A lot of doctors have ratings on there now. I have learned that it is important to have treatment as early as possible. Good Luck with everthing and again Welcome!

weight loss related to PN somehow?
 

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 :p
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.

Hi Kevin and all folks on this thread
 

I was pre-diabetic. I weighed 192 on a five foot one frame. I lost 65 pounds for BP, to avoid diabetes, and to take weight off my bad ankle. Have some kind of PN on my left foot going up my leg. I wonder if there is a connection too as this didn't happen to me until I lost the weight. However I did have two surgeries on that foot. Just throwing this out there, as I don't know what caused this either. ginnie

Welcome to Neurotalk. I have found this thread interesting, I have spent half my life dieting and at 5'10" I first went to a slimming club where they decided I needed to lose 2kg- I mean how ridiculous was that! I then started yoyo dieting and I blame that for my weight gain now, I messed with my metabolism and I didn't need to. I have a secret theory that some diet pills I took 15yrs ago could have caused my PN, any comments......?
Oh and I was going to start dieting tomorrow but I have now convinced myself not to bother lol.

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... :rolleyes: )

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.... :mad:

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. :rolleyes:

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. :p

"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

For burning I use Biofreeze. It really works for several hours.
It is a vanishing gel base, and has Ilex (yerba mate herb) in it.
The herb part is an antioxidant and I think helps with the burning.

It is now available to the public on iherb.com and Amazon.

I shall certainly give that a go, thank you. :)

Hi Kev,

Yep, stress exacerbates just about everything, and in the long run it's even worse.

I would urge you to keep up with supplements that feed/support your nerves, even if you can't discern any immediate benefit. It can't hurt, and just may help prevent things from getting worse than they are.

I don't know if gluten was a factor or not, but if the diet improved things - even for a while - it may suggest that you have other dietary triggers that weren't present while you were on the diet. If you get any sudden/temporary "flares" of symptoms, I'd think back to what you've eaten in the recent past (day or so) that might be a trigger/factor, so you can avoid that in the future.

Hang in there and keep reading/learning about this stuff. I'm learning all the time and finding some slight improvement in small incremental steps. ;)

Good plan.

Doc

Hey Osband,
Have you tried lowering/banning sugar ingestion? That seems to be working for me, but well, I stopped eating sugar (glucose, fructose) and started taking supplements at the same time so there's no way to know.

I'm favoring the theory that PN in non-diabetics like us might still be due to damage by spikes of hyperglycemia. I think Dr. Smith said it better somewhere.

Oh, I stopped drinking coffee too, because it looks like caffeine makes your blood sugar after a meal not only higher but also keeps it there for a longer period of time. That story is at this post.

And well, I also quitted stressing so much about it. Argh, maybe that's the useful part... :p

:Ponder: Maybe the effect of "no sugar-no coffee-more vitamins" is to allow some people to finally take it easy and THAT'S what improves the PN? There could be something there, you know?

Thanks for the update, take care.
sUsY

My supplements made a huge difference and now no suger, low carbs has really accelerated my healing. Even though I have very normal blood sugar, no problems at all. For me at least, sugar itself is very bad for my nerves. I am so pleased about it and happy my doctor is good. It is so sad that most doctors know little about healing. Just drugs.

Hi there, im 38 & have similar syptoms myself! Although, mine have been since Jan. 2012. Started w/ a weird numbness in my left pinky finger, then just spread through the palm of my hand, then both hands, now my feet, legs & arms too! At times the pain is unbarable, since all this began, i literally have no feeling in my hands & feet, & legs too, my walking has got worse, & my daily activities r horrible! i feel at times (NOT REAL) im on Neurontin, along w/ twice a week B-12 shots, that my husband has to give me. Ive had MRI's EMG, & many-many blood tests. All the blood work came back ok, but i do have lesions up & down my spine into my brain stem! I seriously cant handle much more. Now going to a Gastaologist in July b/c my body also has an absorbtion problem, not to be gross, but (EVERY MORNING) i have severe diarehha atleast 2-5 times, & trust me, sometimes i dont make it, its very embarrassing, & a feeling of helplessness! I just hope & pray this can & will get under control & soon too, b/c im not 1 to be so depressed, im usually an upbeat person, & this is really hurting my self esteem, i just feel like this will never get better! I enjoy going shopping & being w/ my family/friends, but lately, who wants to, when u feel so odd? Just was wondering if u or anyone else is going through this starnge & scary problem. TY for reading, Gina*

Hi chick, gina
 

Glad you both found NT. This site has been a good thing in my life, and has helped to keep my sanity for sure. I do know about PN, it is one of my problems. I just have it on one foot, but that is enough. Mostly I have cervical, and degenerative joint problems. I am sorry you suffer from PN. It is miserable and so many folks suffer from it. Hope you get some kind of relief. I went to a new pain specialist, who is now using some nutritional B12 and B complex vitamins to help. This is the first time I took suppliments. Maybe someday scientists will find a cure for PN and RSD, and all these kinds of issues, that don't seem to have a cause. All my best you you both. ginnie

Similar symptoms
 

Kev, I too have been diagnosed with small fibre neuropathy following a skin biopsy - looking for patterns we have noted that the burning is often worse or starts about 15 mins after food.

Hi DataM, Welcome.

That could be indicative of a food trigger. Have you figured out which foods are/may be causing the burning? With some folks it's gluten, but everyone is different. With me it's some types of hot peppers, but not all (weird, I know...)
Google: peripheral neuropathy food triggers for lists of common ones.

As you continue reading this forum (particularly the Sticky threads) you'll find a lot of good practical information on curbing symptoms and progression. Make use of the archives (Search function) too. ;)

Doc

When you eat, if you have insulin resistance, a huge bolus of insulin is released inappropriately. This increases activity of Cox-2 prostaglandins/cytokines which are inflammatory. You can test this by trying some aspirin before you eat. 45 minutes before. If some of the burning is blocked, then inflammation is a clue for you.

You should have a fasting INSULIN done to see if it is elevated.
This can reveal a trend to impaired glucose tolerance which is pre-diabetic.

People with reactive changes in blood sugar at meals, often get gustatory sweating. If you get sweating with the burning that would be another sign of latent diabetes.

Hello all,

Thought I'd update you on where this is right now.

To go over the basics. Had left foot pain since October 2011, right foot pain since Nov 2011, both hands added in Dec 2011. I had a massive stress out, stopped taking my calcium channel blockers for blood pressure (maybe this wasn’t wise but I exercise a lot these days and my BP is just about in the normal range), imagined the worst. For some reason this was as bad as the pains got (sometimes, I suspect the calcium channel blockers). They never progressed from here.

It’s pain around the sural nerve in my left foot, right foot is a bit random, but it hurts the least out of all my hands and feet. Hands only really hurt when I’m not moving them much (say, when holding in a position for a long time, on a desk etc). But when they do hurt… oh wow do they hurt.

It’s only EVER pain. No numbness. No tingling. No stiffness.

I tried the gluten free diet. Seemed to work at first, but quickly I discovered that it was still there, no better. It only seemed to be good during the ‘high’ I got from the expectation of it working.
Tried the recommended B12s and most of the supplements, didn’t appear to have an effect.
Had blood tests and MANY home tests with blood sugar kits. Blood sugar is normal, not anywhere near pre-diabetic phase.
Had multiple MRIs, nothing found.
Had nerve conduction tests, nothing found.
Neurologist examined me. Perfect balance and no external signs of neuropathy WHATSOEVER. She sent me away, recommended anti-depressants for the pain but nothing else…… I wasn’t pleased.
I have one final check up with the Neurologist in Nov 2012.

During the last 10 months I’ve had VERY brief periods of no pain. For example, 2 weeks ago I managed to experience 4 days of drastically reduced pain. I’m not sure what caused this. I wasn’t taking any medication, or following any diet. I was just chilled out, and had spent a very sunny day in the park the day before the pain-free period started. I was relaxed, and even managed a tan, but I have no idea why it affected me.

My current theory is that stress affects it more than anything else. I’ve struggled with stress for many years, and it sort of rules my life. I’m always on edge one way or another. As for the neuropathy…..it’s a mystery to me…. and also a mystery to the neurologist. Unfortunately, it’s massively frustrating and painful at times. I’ve not yet resorted to the anti-depressants…… I have heard many bad things about them making you deathly tired.

Anyway. I’m getting on with life and try not to complain about it too much, as many people have conditions far worse than mine.

Hope you are all well,
Kev