New symptoms.
 

Hi all. I was hit with a new symptom a couple of weeks ago, I say hit because it was so out of the blue and actually bent me over double in pain. I was sat on the sofa reading when from nowhere it felt like someone had sent an electric shock through the toes on my right foot. The pain was excruciating lasting a few seconds. Afterwards there was a residual ache for a few minutes.
It happened again a few minutes later and then stopped. It happened a couple more times over the week but last night at work it happened six times in the space of twelve hours. One time was while I was driving and it was such a shock I ended up bent over the steering wheel.
I am wondering if anybody else has suffered these sort of symptoms? How bad do they get and is it a transient symptom or here to stay?
Thanks for taking the time to read this and I look forward to your replies.

Yes, this is a common symptom of PN and can be mild to severe pain.
They occur at random, but ususally when I'm at rest, nit being active- but can happen while active.
I say I have a gremlin who darts out, at random, from behind the baseboards and then stabs me with a 12" long ice-pick, all the way in- then runs away and hides behind the baseboards again.

Thanks for the reply. Its slightly reassuring to know this is normal. I have a question if you dont mind my asking, how long after diagnosis did this start? My docs are concerned at the rate that my neuropathy is progressing. They think it is my diabetes but they are not 100% certain as my diabetes isunder excellent control.
Thanks, Ian.

I started getting shocks about 4 months after my PN started and a month before I was officially diagnosed. Now, I get them about 30 times an hour, give or take a few. Sometimes they can be mild shocks, while others totally take my breath away and cause me to scream out in agony. It's the worst type of pain I have.

Mine started along with everything else in a slow progression over about a year, then leveled off and has been at a constant but not progressing to any significant degree for the past 4 years. (First Dx was 12 years ago, but its been longer, I think)
It is now under control with Lyrica & Tramadol.
Each of us is different, and no two stories are exactly alike. You cannot glean information about yourself, from the way others react. You just have to wait & see what is happening with you, & take it from there..

:eek::eek::eek:
That made me think of this: http://www.youtube.com/watch?v=4TpWSNT5QhE

And they're doing a remake!:eek::eek::eek:

Sorry about the shooting pains, hemse. I get those once in a while too.

Understand
 

Hi I completely understand what your going through except the pain is in my thighs. I have been woken up in the middle of the night screaming in pain and my thighs are very sensitive aswell as the palms of my hands and the soles of my feet. I have ended up in a wheelchair within 7 months of the onset of the symptoms! The cause of my problem has not been found yet but I hope for yours and my sake that there is help and pain relief. Xxx

i get pain like that but mine feels like the gremlin is taking pliers to my toes and squeezing the joints. the ice pick probably wasnt available because Bob's gremlin already had it.

ive had PN for 9 years now and didnt get these type of sudden shocking pains until a few years in.

I get them all the time. I've had them before being diagnosed too as well as after. I also get severe shooting pain in my bones which is just as bad as the electric shock. Mine also come at random and usually while I'm at rest. Sadly, you aren't alone with these pains.

Thanks for all the replies guys. Guess I will just have to learn to live with it.

We are all the same, yet very different. I got this type of pain in the calves of my legs. Like electric shocks, being poked with a pig prod. Sometimes they are very mild, sometimes they make you want to cry out. Mine go on for several days, then disappear for a long time, then hit again. I'm guessing they are a part of the entire picture, yet sometimes only come for a visit.:hug:

Hi Hemse,

Don't just learn to live with it! You're at the right place to get helpful ideas!

Mrs. D. has great info, including info from "Rose", about how a Vitamin B12 deficiency causes terrible peripheral neuropathies. See Mrs. D's "sticky" thread about this.

Have you had the 3 blood tests (in one needle stick) to see if you might have a Vitamin B12 deficiency? (all 3 are necessary)

1) Vit. B12 blood level test
2) MMA/Methyl Malonic Acid blood level test
3) Hcy/Homocysteine blood level test

(Mrs. D. and Rose, or anyone,-- if I made any typos about this, let me know).

---------------------

Cara knows very much, about how a GLUTEN SENSITIVITY (&/or milk protein sensitivity, etc.) can cause small intestinal mal-absorption, including Vit. B12 deficiency, leading to all kinds of neurological problems.

Do you eat gluten? (a protein-like substance in wheat, rye, barley, "cross contaminated" oats, etc.)

Do you eat or drink milk products (containing milk proteins)?

If you're "sensitive" to gluten &/or milk proteins, then eating or drinking these proteins, can cause various auto-immune attacks on many areas of the body---including the pancreas, causing DIABETES, &/or the THYROID GLAND, &/or JOINTS (causing rheumatoid arthritis), &/or BRAIN (causing seizures, foot dragging, wide based gait, etc.), &/or SKIN (itchy rash called Dermatitis herpetiformis I believe) &/or SMALL INTESTINE (causing either Celiac Disease, or a non-Celiac type of small intestinal damage, INLCLUDING "MAL-ABSORPTION" PROBLEMS), &/or REFLUX, &/OR PERIPHERAL NEUROPATHIES!)

See Dr. Kenneth Fine's "EnteroLab" website, about non-invasive stool sample testing, to discover food protein "sensitivities", at www.finerhealth.com (Cara first told us about this website, and about Dr. Fine, MD--gastroenterologist out of Dallas, TX)

----------------------

Do you take ACID BLOCKERS for ulcers &/or for GASTRIC REFLUX? If yes: These prevent the stomach from making "Intrinsic Factor" molecules, which are needed to escort dietary Vitamin B12 from the stomach to the last part of the small intestine (ileum), where the Intrinsic Factor molecules would let go of their cargo--Vit. B12 molecules--and the Intrinsic Factor molecules then "facilitate" absorption of the Vit. B12 molecules, into the microscopic finger-like projections called "villi", where the B12 goes into a tiny capillary within each "villus", leading to getting the B12 into the bloodstream, and eventually into storage areas in the liver.

You found this great website here, so don't give up!

Carol
concerned lady
http://cantbreathesuspectvcd.com

FWIW, my B12 is tested regularly and my results have come back high from supplementation. That said, people still advise me that I am probably suffering from "gluten sensitivity" and thats causing my pain. I really hear this so much that I now turn a deaf ear to it. Damaged nerves, compressed or otherwise, hurt.

Sign me a frustrated person in pain.

Going gluten free to try it out & see if it helps, seems to be no big deal.
you adjust your diet & shopping list accordingly for a month or three
and see if it helps. No-brainer!!

I went gluten free, and had all kinds of bloodtests and finally a bowel biopsy and they were all negative. Oh well....my gremlin seems to be from something other than wheat. No, not a wheat gremlin.....I have a particularly nasty unknown gremlin who jabs me all over. Worst is at the wrist I broke....the thigh as well, sometimes the foot, the head, eh, all over.

I recently had a cortisone shot in the wrist and the gremilin there is quiet, for now....wait til this wears off, he will be meaner than......I picture him all bundled in duct tape right now, just furiously fighting to get free to poke again.

On the cortisone, they did it to see if it calmed carpal tunnel which I tested negative for, and it did. This issue is worst at nite with numbness of thumb, index and middle finger....I thought for sure it would be CPS, but it isn't....however, why did the shot totally alleivate symptoms? I wonder how this connects to my autoimmune disease?

I agree with your approach, but my frustration stems from too many people thinking this is a cure all. I seem to be venting about my local folks here. There is a long list of symptoms associated with GS and there can be a lot of problems stemming from going gluten free if its really not indicated. There are also basic tests Dr. can run to check for it as well.

I get cortisone shots all the time to calm angry nerves in my neck and head and it does work for awhile. Enjoy the break while it lasts :)

Wow...couldn't have described it better myself. I've been dealing with that, failed back surgery and osteoporsis for a while now. You sometimes get symptoms and say to yourself "hey...that's new...never felt that before". To go through the spectrum of sensations I've had could fill a book. But never fear, it is just a symptom. Sometimes it'll pass all on it's own. If it persists I'd suggest discussing it with your doctor.

Best of luck!

Agreed that not everyone--
 

--has a gluten problem that will magically disappear when they stop eating, but vigorously disagree that going gluten-free can be dangerous.

I don't know why anybody thinks we need wheat, brley, or rye to survive, but none of those grains have specific nutrients that we can't get from other sources, and no one HAS to have them in one's diet. So going gluten-free is a harmless thing to do, and one can see if it has any salutary effect on one's conditions. It may not make any difference, but it certainly won't make things worse. Except, of course, if one indeed does have problems with gluten and goes through temporary withdrawl symptoms, which have been reported occassionally (gluten can be addictive as it interacts with some of the brains opioid receptors, and some people get symptoms upon stopping it in the same way some people get sugar withdrawl symptoms).

I get it too. It can really take your breath away. I thought it was severe cramping. Fortunately, it passes...

Mere

When Sleeping
 

As far as abnormal sensations, pains, pin pricks etc, do you all experience these while actually sleeping, or do they disappear during sleep and appear upon awakening?

I saw this movie years ago and it really scared the hell out of me! :eek: They are doing a remake?! Look under the bed before you put your feet down!

I remembered seeing a news blurb about this issue. I can't find the same one, but here is a link to a study which discusses the down side of GF diets when they aren't needed: http://www.healthnews.com/nutrition-...diet-3288.html

Very hazy artcile, that--
 

--I'd love to see the original study, see if it was double blinded, see who was tested and what other conditions they had, etc.

All I can say anecdotally is that there is no single food source that I've ever found evidence is ABSOLUTELY needed by people. We all need carbs, fats, protein, vitamins, fluids, etc.--but there are so many sources that any of these can come from.

Sorry, I went to the Cambridge Journals site and can't access it without a paid membership. The other study I saw was a US study and also came up with similar results regarding the lack of probiotics. I don't care to debate this with you as its not my intent. I'm venting over people saying its the answer to all of my pain issues, which in reality it isn't. I don't have any symptoms of celiac disease and I don't see any point in cutting gluten out of my diet. If I do locate the US study, I'll post it for you.

Dear EEO3,

You wrote: "I don't have any symptoms of celiac disease and I don't see any point in cutting gluten out of my diet."

You may find it interesting to know that most people who have gluten sensitivities DON'T have Celiac Disease! Most gluten sensitivity is NON-CELIAC! In fact, only about 1% of people, in general, have Celiac Disease, where, anywhere between 33% and 66% of people may have some kind of non-Celiac types of gluten sensitivity. That's huge!

A helpful website that talks about this in detail, is Dr. Kenneth Fine's "EnteroLab" website, at this link:
www.finerhealth.com

Dr. Fine, M.D., is a Dallas, Texas gastroenterologist, who Cara and Mrs. Doubtfyre originally told us about, on a peripheral neuropathy (PN) forum, back at the Mass. General PN forum, years ago.

Dr. Fine himself, suffered for many years (in his youth) with various food protein "sensitivities", and finally found that he was "sensitive" to gluten, milk proteins, etc.

Dr. Fine's ("EnteroLab") STOOL SAMPLE (NON-INVASIVE) TESTING, is much more reliable than blood testing, and even endoscopic biopsies, for these reasons:j

1) The large intestine (colon/gut) is where antibodies to gluten are made, in people who are "sensitive" to gluten. These are "IgA" type antibodies (different from "allergy" IgE antibodies).

Stool itself, is also made in the large intestine, so stool picks up abnormally large numbers of antibodies to gluten, in those people who are gluten sensitive.

But, most of these IgA antibodies stay in the large intestine, and don't escape into the bloodstream, so blood tests for these antibodies to gluten, are notoriously false negative!

2) People having non-Celiac types of gluten sensitivity, may have indigestion and mal-absorption in their SMALL intestines (similar to those with Celiac Disease), but the "villi" (microscopic finger-like projections in the small intestine) don't obviously show the damage, the way the villi show damage in those with Celiac Disease, when a biopsy is viewed under a microscope.

Dr. Fine explains that in non-Celiacs, these gluten-sensitive people may have SUB-MICROSCOPIC DAMAGE to their small intestines, which is NOT VISIBLE under a microscope, yet still causes problems with the functionning of their small intestines, due to an auto-immune attack to their small intestines.

3) In non-Celiacs, as well as in Celiac types of gluten sensitivity, "mal-absorption" of Vitamin B-12, etc., causes NERVE DAMAGE, such as peripheral neuropathies!

When gluten sensitive people stop eating gluten, their small intestines are able to heal, and thereby are able to again absorb the vital nerve-nourishing nutrients once more, allowing them to heal their damaged nerves!

Taking "sub-lingual" Vitamin B12, also helps, by bypassing the damaged digestive system. Sub-lingual (under the tongue) B12 is as effective as taking "shots" of B12.

---------------------

I agree with Glenntaj, 100%, on everything Glenntaj said.

----------------------

My own hubby has a non-Celiac gluten sensitivity, discovered years ago, by taking Dr. Fine's "EnteroLab" stool sample testing.

I get no kickback from Dr. Fine. Too bad..I could've retired by now!

I myself had/have a peripheral neuropathy that is greatly helped by taking sublingual Vitamin B12, in the "methyl" cobal amin form (works better than the "cyano" cobal amin form. I suspect my PN was due to low stomach acid. (by the way, scads of people taking ACID BLOCKERS now are suffering from peripheral neuropathies, because acid blockers prevent absorption of Vit. B12)

I learned about the "methyl" form of B12, from Rose, Cara, and Mrs. Doubtfyre, back on that Mass. Gen'l Peripheral Neuropathy forum, before I joined this good forum.

If you or anyone is interested in finding out whether you are low in your Vitamin B12 liver stores, here are 3 tests that Rose said should be taken (blood tests, all done in the same one needle stick):

1) Vitamin B12 blood level test (will show low value, if you are Vit. B12 deficient), and

2) MMA/Methyl Malonic Acid blood level test (shows an "elevated" result, when one is B12 deficient), and,

3) Hcy/Homocysteine blood level test (shows "elevated" result, when one is B12 deficient).

Good luck to you and everyone!

Carol
Concerned lady
http://cantbreathesuspectvcd.com

study was of only TEN people! (too small a population to come to any firm conclusions
 

Here's a link to an abstract of that "study" of, would you believe, TEN "healthy" people, whose counts of probiotics in their "guts" decreased, while they were eating gluten-free. (I wonder how healthily or un-healthily they ate, while going gluten-free!)

http://journals.cambridge.org/action...ne&aid=6371220

Here's an easy solution to that problem:

While going gluten-free, take milk-free PROBIOTICS (acidophilus, bifidus, etc.), preferably without FOS's (fructo-oligo-saccharides), which (the FOS's)feed not only the beneficial bacteria/probiotics, but also feed bad bacteria, leading to digestive disturbances, reflux, etc.

I also have included some "tips" that I've learned over the years, from Cara and others, about how to painlessly go gluten-free, without any adverse health effects at all! See webpage 10 of my website, for links to gluten-free websites, and this includes this wonderful forum here... 'Neurotalk' !

Carol
Concerned Lady
http://cantbreathesuspectvcd.com

wondering what those 10 people ate, before & during gluten-free trial:
 

I wrote this to one of the scientists who did the 'study', and I'll report back, if and when I get a reply:

Dear Dr. Sanz,

Regarding your study, please tell me what exactly did the 10 healthy people eat and drink, when still eating gluten, and what exactly did they eat and drink, while eating gluten-free, for that one month? In other words, how exactly did their gluten-free diets differ from their glutenous diets?

I'm referring to the abstract of your study, at this link:
http://journals.cambridge.org/action...ne&aid=6371220

Thank you in advance!

Sincerely,

Carol

------------------------

I'm wondering if when they ate gluten-free, that they may also have been going milk-free too, and then, they may not have been nourishing their own probiotics (probiotic bacteria like to eat milk sugar/lactose).

Also, grains may have probiotic bacteria living on them, naturally, so if they avoided all grains, it could explain why their probiotic counts decreased.

However, in any case, taking probiotics can solve that problem.

I am the poster child for gluten intolerance caused neuropathy. I didn't know it 11 yrs ago (well, actually more than 11 yrs), yet neuropathy was one of my symptoms. I was suffering from malabsorption..I had gastro issues along with neuro issues. My sister had finally been diagnosed with celiac, and she talked me into going gluten free too. I had no insurance and no job at the time, so I couldn't afford to be tested. I have been gluten free for 10 yrs last month. There are many gluten intolerants whom have no symptom other than neuropathy...it's worth having the test, just to be sure, rule it out!


This is not always true. For some, the neuropathy goes away, which maybe they actually do not have neuropathy as of yet, just symptoms beginning. Some of us take years and years to heal, some never heal totally...yet sticking with the gluten is even worse when you have issues with it.

People with gluten issues have a 60% higher cheance of stomach cancers...this alone is one of the best reasons to be tested.

I can't agree with this totally either. Not all probiotics are created equal and many do more damage than good. I have never found one I could use. The best thing a person can do is to eat natural, whole foods, nothing processed, stay away from sugar, modified corn syrups, pure cane sugar and such. And for most with gluten intolerance, B12 is a must. At this time I am takiong 5000mcg daily of Jarrow B12, and my neuropathy is not progressing, it never went away, but stopping the progression is good too.

Thanks for replying, Darlindeb! :)
 

Dear Darlindeb,

Thanks for replying! I remember you, from the old days! :)

All good points you've made, about how each person is very unique! :)

By the way, I've learned that some people who are "sensitive" to milk proteins, can sometimes develop a Celiac-like condition, including with damage to their small-intestinal villi, that is pretty much identical to the damage seen in those having Celiac Disease!

And, people with gluten sensitivity who keep eating gluten, (and maybe also those who have a milk protein sensitivity and who keep eating or drinking milk proteins), can develop auto immune damage to any one or more of these areas in the body:
-- nerves, causing neuropathies
-- thyroid gland, causing either over or under-active thyroid conditions
-- pancreas (affecting production of digestive enzymes &/or production of insulin, leading to diabetes),
-- joints (causing rheumatoid arthritis), brain (causing seizures &/or foot dragging, etc.),
-- skin (causing an itchy rash such as dermatitis herpetiformis)
--etc.

---------------------

Dr. Kenneth Fine's "EnteroLab"'s (very reliable)non-invasive stool sample testing includes any one or more of tests (each person's choice) for sensitivity to these "proteins":

GLUTEN (in wheat, rye, barley, spelt, kamut, etc.)--and rice is gluten-free (if not "cross contaminated" with gluten, at packaging plants). Some gluten-sensitive people can eat rice, while others need to go grain-free completely. This varies from patient to patient. Brown rice (whole grain, natural rice) that is organic, is more nutritious than denatured white rice.

Good health food stores have gluten-free tortilla shells available (like Food for Life brand, etc.), brown rice pastas like Tinkyada, etc., that taste delicious, and there are gluten-free bakeries all over the place, that make delicious gluten-free breads, desserts, etc.

MILK PROTEINS (in milk, yogurt, cheese, pizza, cheesecake, ice cream, butter, etc.). For those who can't live without butter, there's "ghee" (clarified butter, where the milk proteins have been removed), available at health food stores. For many, organic olive oil, etc. substitutes well for butter.

SOY PROTEINS (found in soy-"milk", soybeans, etc.--read labels)

YEAST PROTEINS (yeast protein-sensitivity has been associated with Crohn's Disease in some people)

EGG PROTEINS.

----------------------

Some are 'sensitive' to CORN proteins, and I think Dr. Fine is working on making a corn protein sensitivity stool sample test.

Anyone interested in calling EnteroLab (besides looking at www.finerhealth.com) can call them in Dallas, TX, at 972-686-6869.

Dr. Fine says that an alternative (free) way of seeing whether a person is gluten sensitive or not, is to seriously avoid gluten for 3 months, and see if symptoms improve (or see if symptoms don't get worse, as you said, Darlindeb!).

"Oats" are controversial. Most oats are cross contaminated with gluten, at packaging plants. Gluten-free (at least "tested" to be) oats are available at health food stores, but some are "sensitive" to oat proteins, so many believe it's best to avoid oats, to be on the safe side.

Some gluten-free people are OK with millet, tef (an Ethiopian gluten-free grain), and even corn, but others have to avoid all of these grains.

---------------------

Thank you for sharing what helps you, including the Jarrow Vitamin B12! I use KAL brand, and it helps too!

--------------------

Avoiding acid blockers, is also helpful, when possible, since acid blockers prevent the production of Intrinsic Factor (I.F.) molecules, by the stomach, where these I.F. molecules would have normally "facilitated" small intestinal absorption of Vitamin B12 molecules, in the ileum (last third of the small intestine--thank you Rose for this info!).

By not taking acid blockers, and if the stomach is making enough hydrochloric acid (HCl), the stomach is "allowed" to produce the needed I.F. molecules, which then escort B12 molecules to the ileum, and help the B12 molecules to be absorbed into the microscopic villi.

Peripheral neuropathy forums include MANY people having PN (peripheral neuropathies) whose peripheral neuropathies are at least partly due to being on all these acid blockers, that are making fortunes for drug companies, while hurting patients' nerves!

Good luck to all!

Carol
Concerned lady
http://cantbreathesuspectvcd.com

mystery of the "study" & the writer in "HealthNews"...
 

I spoke by phone, with the writer of the article that quoted the 10 person "study", that concluded that going gluten-free could hurt one's count of their own probiotics (acidophilus, bifidus, etc.).

The writer of that article in HealthNews.com is Lara Endreszl (in the San Francisco Bay area). She sounded like a nice lady, but seemed to know very little about gluten sensitivity. She was not aware that there is such a thing as non-Celiac gluten sensitivity, and she also didn't know very much about peripheral neuropathy (when I asked).

She used to be a staff writer for an online health magazine called HealthNews.com but she hasn't worked there since the beginning of 2010. HealthNews.com has no phone number in their website to call, and when I tried to register so I could "contact" them, they never sent me a password! They are a mysterious group, that I now suspect may be related to either insurance companies &/or drug companies!

Lara now works for a mental health (behavioral health) division (called Optum Health) of an umbrella group (based in Twin Cities, MN) called UnitedHealth Group.

Also owned by the umbrella group UnitedHealth Group, is, a big HEALTH INSURANCE COMPANY called United Healthcare! (very expensive health insurance company...).

I asked Lara to please read Dr. Kenneth Fine's "EnteroLab" website, at www.finerhealth.com so she could learn more about non-Celiac gluten sensitivity. I won't hold my breath, but I hope she does.

So, my moral of this story, is to not believe everything that's in print (including what I say) right away, just because it's in some "health"-looking website. Check up on everything, to be sure there's not some motivation that we wouldn't have know about otherwise.

One example of this, is the "Ad Council", that is mentioned on so many radio ads. I checked into who exactly is on the board of the "Ad Council", and was sad to see a significantly big number of BIG PHARMA reps!

I'm still waiting for a reply from one of the "scientists" I emailed, who supposedly did that 10 person "study" showing how supposedly bad it is to eat gluten-free, if not a Celiac patient. I'll report back, if I get a reply.

Carol
concerned lady
http://cantbreathesuspectvcd.com

I haven't had that one, yet... There is this invisible guy with and ice pick who likes to stab me in the foot or thigh through.