New 35yr old poster - My experience

Idiopathic PN · 05-02-2012, 07:14 PM

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.

Quote:

Originally Posted by mrsD

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.

mrsD · 05-03-2012, 03:53 AM

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.

Quote:

Originally Posted by Idiopathic PN

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.

Dr. Smith · 05-03-2012, 09:42 AM

Quote:

Originally Posted by mrsD

... I did gluten free for quite a while. I did not see much PN effect for myself however. ....

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.

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."

~Alexander Woollcott, Algonquin Round Table and inspiration for The Man Who Came to Dinner

Doc

Osband · 05-09-2012, 04:20 AM

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

mrsD · 05-09-2012, 07:14 AM

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.

Osband · 05-09-2012, 07:42 AM

I shall certainly give that a go, thank you.

Quote:

Originally Posted by mrsD

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.

Dr. Smith · 05-09-2012, 08:56 AM

Quote:

Originally Posted by Osband

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).

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.

Quote:

I'm just sort of getting on with things in the meantime.

Good plan.

Doc

dyctiostelium · 05-10-2012, 06:45 PM

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...

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

Quote:

Originally Posted by Osband

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).

(...)

Kev

Sallysblooms · 05-10-2012, 08:56 PM

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.

chick5899 · 05-28-2012, 02:05 PM

Quote:

Originally Posted by Osband

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

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*

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