Thoughts on my changing PN condition
 

This board has been the best resource I've been able to find and it's nice to know that I'm not alone in what I thought at first was some bizarre condition. I posted in another category but wanted to get more specific thoughts on managing my neuropathy which just won't go away.

I'm a 35 year old male in great shape and have never really had to go to the doctor much in my life. I'm active and eat well. The only thing that's really bothered me in the past is milk which I chalked up to lactose intolerance. About a year ago (I still remember exactly where I was), I started to have tingling in my face after eating at an Indian restaurant. Come to think of it, I had experienced a more mild version of it, always after eating, every once in a while for the decade before--just in the face. This time the tingling moved to my arms, then to my legs and began to change in sensation. First it was pins and needles and then turned to burning from my shins down (and electrical pulses in the feet and shins). For several months it was mostly in my legs and feet. After about 10 months the tingling (sometimes light pins and needles) basically started to evenly distribute itself throughout my body. I had a myriad of tests from Lymne, to B12, to cancer, to diabetes, etc. I saw a neurologist who did EMGs and had me do MRIs of the brain and upper and lower back. Everything turned out normal, except a finding of antiglaidines which my neuro assumed was a gluten allergy--celiac neuropathy. I had an endoscopy and it turned out negative for celiac and my GI doctor doesn't have a clue that PN could even be caused by something GI related (I basically had to educate him). I started taking Neurontin which took the edge off of the tingling but didn't make it go away. However, it made me feel very foggy with pressure behind my eyes so I stopped. Now the PN is back as usual. When I exercise it goes away but after it returns. I find myself shaking my leg constantly because the motion either makes it go away or distracts my brain into not registering the sensation.

I'm taking supplements now since the GI doctor and my Neuro basically don't know what to do. The supplements are:

- Multivitamin
- Vitamin E
- B-1 complex
- Vitamin D
- Probiotic
- Fish oil (stopped but am going to restart)

I'm trying the gluten free thing and it was suggested on another thread that I continue it for 6 months (it's been 2). However no change yet.

No other systems that I can tell.

My question is if there is anything else you would all suggest that I do or take to help? The condition is not debilitating but drives me CRAZY and I'm trying not to assume it's something that may turn worse (although, the uncertainty is the worst part of it). It doesn't help when the neuro says things like we may never know.

Your thoughts are greatly appreciated to help me manage the PN.

This does sound--
 

--like some molecular-mimicry autoimmune process, and it may very well be related to gluten sensitivity. That isolated anti-gliadin finding is often found in those whose gluten problems present neurologically, rather than gastrically (that anti-transglutaminase level is more correlated with degree of villous atrophy in frank celiac), as Dr. Hadjivassiliou has researched (you can find out a lot about this in The Gluten File: http://jccglutenfree.googlepages.com/).

Such people often have subclinical malabsorption issues that may lead to neurological symptoms as well--you should have your B- and D-vitamin levels checked, especially B12, B1, and B6, and mineral levels looked at.

Avoidance of gluten may enable the gut to start healing over time, and may help with neurological symptoms as both malabsorption and direct effects of gluten on neural epitoptes recede, but this may take a very long time. (Nerve healing in general is very slow). One may also find that one has multuiple sensitivities and may need to examine other foods (caesin is a freqeunt co-culprit) to get a full recovery effect. Even then, a number of people have reported that they have just arrested the neuroplogical progression rather than reversing it--inddividual results vary widely. People with zonulin dysregulation--zonulin regulates the cellular spacing in the gut, mediating what kinds/how many pathogens may pass through into the body for possible reaction--seem to have the most difficulty (the greater the dysregulation, the more likely that things will escape the gut and be reacted to, and the more likely one of these will start an autoimmune reaction through molecular similarity to some kind of body tissue).

I think you have to be REALLY strict about not eating gluten, and experiment with other food elimination. It might behoove you to revert to a very paleo-type diet--fruit, vegetables, nuts you're not allergic to, lean meats, minimal processed food--and see how that goes.

B-12 sublingual, METHYL cobalamin 2000-5000mcg/day wouldn't hurt,
and may help-over time. Halting PN progression is a start. It takes time.

Hi. Neurontin can take awhile and you have to get up to the correct dose. This may not me the med for you but I know in the past I tried it and did not find relief and also had severe pressure in my head. After 2 years I tried it again and the initial side effects wore off though I am still only on 1800 but am going to work on increasing again. Have you tried any other meds?I though that gi condition can cause pn like celiec. Have you looked on that board to see as well? I know you stated you were healthy before this but have you had any other illness,injury,etc.I am assuming you have had your blood sugar tested and what was your b12 number? Anything you can think of that has not happened to everyone? I hope you feel better and I wish I had more direction for you.

Before I started taking B12 supplements, the B12 result was 496. Reference range says 211-911. I've been taking a supplement since but haven't been tested again.

No injuries that I can think of.

Glucose, Serum result was 86 with a reference range of 65-99.

I'm going to try a test for lead, mercury, and arsenic poisoning. I do have the silver fillings in my teeth which I've heard can be problematic but I can't imagine that would cause this.

I went of the Neurontin yesterday to see and today I got a serious migraine. Not sure if it's connected or not. Although, the pressure is less behind my eyes so perhaps that was a neurontin symptom?

Are there any long-term side affects to taking Neurontin. I was at 900 per day.

You have only had it a year so now is the time to try and stop it and reverse the damage.

Have you looked at the sticky "Neuropathy does improve" at the top on the main page? There's great stuff in there. There's still a ton of tests that you can do. Look for lazy jane chart in the sticky. Also there's a great diet and exercise plan on the second page. You have to put your body in the optimum condition to give it a change. Body weight, sleep, diet, exersize, suppliments etc. There all there in the sticky. I think you could do more as far as your suppliments go. Here's what I was told to do by mrsD. I have notice some improvement. Not sure if it's healling or just that some of the suppliments help with the pain.

Good Luck,

Most of us would claim--
 

--that B12 level of 496, pre-supplement, is too low, despite what the reference range is.

Many nations that are not the United States use a reference range that begins at 500 or 550 and hos no upper limit.

Optimally, a serum B12 level should probably be over 700; many of us like to keep ours around four figures. B12 has no known toxicity level.

This does imply that at least some of your neurological symptoms may be related to malabsorption.

B-12 as Methyl-cobalamin not cyano-cobalamin is the best form for absorption.
It is relatively inexpensive at $0.10 cents or less, per day for 1000mcg lozenges.
I get 'Jarrow' B12, from iherb.com

Hi. My pain doctor said the pain dose is at least 1800 up to 3200. I am on 1800 right now. I don't know what the long term issues are as that has never been a concern from the doctors I have worked with. If you are going to go off I would not just stop that can be dangerous. For me the cause is unknown. I have been to almost every specialty,multiple opinions,and so many diagnostic tests so for me now it is just managing the pain. I am a young case to as I developed this at 28. Hang in there

AS Daniella said just stopping neurontin can be very dangerous. It is an anti seizure medicine and cannot be just stopped and started. It has to be titrated up or down or else you risk having seizures.

I was not aware of the risk of stopping. I've been off it for two days now. Should I stay off or take a lower dose for a while? My head feels foggy, sort of pressure behind the eyes.

if it were me i would titrate down slowly

I am not aware of long term issues with Neurontin/Gabapentin.
I was taking it for almost 7 years before I switched to Lyrica.
Regular monitoring of liver & kidney function would be advised
on any long tern application of any med.
If no negative side effects occur during use, long term, to my knowledge,
hasn't been formally studied, yet. At least there hasn't been anything written, yet.

I would call the doctor you had rx from or who you are working with. You should never go cold turkey off meds unless your doctor tells you. It is a shock to the body and can create problems.

I called the neuro but couldn't get through. I'm feeling a bit better today so maybe it's getting out of my system. Although, PN continues. I figured it would have been worse to go off for a week, then start back up, and then start to ratchet it down again. At this point, I guess I'll just stay off of it.

Thanks.

Regarding Lyrica, how is it different than Neurontin and are side effects different?

It is very similar, but it does work in a somewhat different way.
The side affects are also similar, (weight gain, edema, sex drive diminished, etc) but are different in individual cases. It is affected in relationship to GABA, but I don't think the mechanism is well known.
You'd have to 'google' it for a comparison and also
go to PubMed for write-ups.
It is stronger, less is used. The comparative ratio is 1 to 6, I believe
(300mgLyrica = 1800mg Neurontin)
It just works for me- when after 6+ yrs on Neurontin, I became
too tolerant and the Neurontin wasn't as effective any longer.
Switching to Lyrica helped, that's all I know.

It's pretty much the same for me other then with Neurontin I had really bad brain fog and with Lyrica I really, really sleepy all the time. Not tired, just sleepy. I was on Neurontin for 6 or 7 years and I don't think it case damage but really how can I judge that. LOL I like Lyrica much, much better. Why? It works for me! Neurontin did nothing really, just took the edge off. Probably because I of the brain fog. :eek:

Off of Neurontin
 

Well, it's been a week now since I'm off of Neurontin. I will never go on that stuff again. My neurologist never said anything about side effects which makes me angry. It sort of helped but I hated the brain fog. The worst part is when I went off since I wasn't told to slowly transition off. It was a rough week but I'm feeling much better now.

My PN seems to have improved somewhat so I'm hopeful it's just gluten sensitivity that was causing it. Saw the GI doc on Friday and was reminded just how clueless he is. He just said no Celiac because the endoscopy was negative and didn't know what to do next. Absolutely clueless. At this point, I'm going to try to stay gluten free for a while to see if the PN goes away completely. My head is still not fully clear. Feels a bit like a constant sinus headache or that groggy feeling when you get up from a nap. Does that ever go away?

These meds that mess with your brain are very disconcerting. Never again.