[lefthanded]

Hi. I am new to the website and the peripheral neuropathy forum.

I have PN in the legs and hands, although my neuro thinks I have carpal tunnel as well. I am getting new EMG/NCV's done soon, and have just started taking Neurontin (up to 1200mg a day so far), with little effect on foot pain, shooting pain, jerking pain, and numbness. But I am experiencing light-headedness, dizziness/vertigo, and wondered if anyone else has been down this road.

I guess I am wondering what to expect, what is not normal and what I have to put up with. Are there any other meds that might help if I can not take Neurontin?

I am an artist and this is severely cutting into my creativity and productivity. I am on disability and SS because of Crohn's/colitis, and art was supposed to be my fall-back activity to help me feel productive and to keep me sane!

[shiney sue]

How long did you say this has been going on? I've been on 3600 mg it took
more than 1200 to stop the spams and such,but she would not go over
3600. Yes there was and has been a problem with the Nurotin and
balance,I still get some spams..I have it in my feet legs to knees,both hands.
and about to be tested again because I may have Carpal tunnel as well,up
elbows and in the right shoulder..I hope you go through that test,I'm also
on morphine 3 times a day 30 megs a pill. Have to been to rehab or
pm? I wish I could tell you there is a magic pill but the isn't,but there
coming up with more..There's over 300 reasons why people have this.

Oh i'm Sue been going at this along time I alsi use a walker made to put
my hands through and have to use a wheelchair if going out far.
I know the hardest part for me is not being able to use my hands.

Where have you gone for all of this,there are some really bright people here.
the weekend can be slow..More people will be here soon good luck
to you. Sue

[MelodyL]

Hi, Welcome to Neurotalks.

My hubby has neuropathy and could not tolerate Neurontin. It made him violently ill. He also tried Lyrica but it did nothing.

They ultimately determined his cause to be CIDP.

They diagnosed him with this after they did a spinal tap. He went 18 years without knowing why he had neuropathy.

I wish you well on your journey of information gathering, and I do hope you can still do your art.

Melody

[Silverlady]

Hi wanted to welcome you,
The stickies at the top of the page contain very valuable knowledge researched by a smart group of people who suffer from neuropathy. Please read them. You will learn so very much about the condition.

Also, check out www.lizajane.org It is a collection of tests to be run to discover the causes of neuropathy. It is also put together by a sufferer of neuropathy searching for the cause of her neuropathy.

I'd also encourage you to post any test results, medical history etc. here. Have you had your B12 level checked lately and if so what was the result in numbers of it. I am so very sorry you have to be here. But you have come to one of the best support sites on the web for people with neurological illnesses.

Billye

[lefthanded]

Oh, I am afraid I am just getting "re-started" on the diagnoistic testing again after all these years. I have been fighting fistulas and strictures and **** fissures with my Crohn's and just now have realized with some of those symptoms under better (not complete) control, that my feet, especially, have become worse. Hopefully I haven't waited too long, but for some of those years (since 2002) the thought of another doctor or another drug was just overwhelming. And for a while the symptoms weren't as bad, and I picked my art back up after three decades of disuse, and tried to keep busy in between the gastrointestinal episodes. But I can not ignore the dropped pastel stick or toaly numb hand after holding the paintbrush . . . or the insanely crampy, painful feet with the hypersensitivity and numbness playing off one another any longer.

I just had blood taken and I believe my physician (I just had to change my personal physician due to a clinic closure) has requested the complete panel. I have never been low on B's before, but I suppose that is always a possible outcome. She is checking my thyroid and other things as well. It is usually my gastro who orders the bloodwork, but I am glad my personal physician did this time.

Another issue I have is that I am stubbornly opposed to the wholesaling of our health to the drug companies, and really didn't want to try neurontin again. (My last neuro gave me samples without dosing information. . . how the heck was I supposed to even know whether they might help, eh?) Between the side effects, the cost, and the donut hole in my Medicare coverage. . . I did not want yet another reason that I might not have the money to keep warm each winter! I swallow dozens of pills , capsules and gel caps a day . . . and use pricey probiotic supplements for my intestines, and am tired of a bigger piece of my economic pie going to pharmaceuticals every time I turn around.

I hoped that by coming here I might learn to avoid trying things that don't work, have the potential to hurt, or otherwise are the best choices, I realize that each sufferer is different. . . it is the same with Crohn's. What works for one aggravates another. I just want to be educated. . . and realized I could research all day long and never really get anywhere. . . but that I might find a forum like this one and benefit from those who have gone before me. It certainly worked in my Crohn's forum, where I found a treatment that is actually helping. I am lucky to have a gastro who is open minded and willing to try new things. Hopefully my neurologist will be just as cool . . .

[glenntaj]

--became the first drug of choice for treating peripheral neuropathy pain (and various other types of neural pain) over the last decade or so, but it's far from the only drug that's been tried or that some have found effective.

There's a list of these in the following thread:

http://neurotalk.psychcentral.com/thread177-2.html

(This is from our Useful Websites section at the top of the board, and is abou the fourteenth post down, compiled by our own Mrs. D.)

I myself have been on Neurontin and the generic version Gabapentin for over five years now, though I take considerably less than when my neuropathy pain was at its height; I've gone from 2400mg/day to 400mg/day now (but I do weigh about 206 pounds, which I'm fairly sure is more than you do).

I did weight about 190 pounds when all this started, though. Among other side effects Neurontin typically has are weight gain and a certain amount of fluid bloating (edema). As an anti-epileptic, the drug shares the quality of many of these of increasing carb craving--though whether the weight gain is mostly attributable to that or to the lessened activity from this condition is debatable.

The other side effects you mention--dizziness, fatigue, lethargy--are also very common. The mechanism of Neurontin is not fully understtod, but it does tend to depress central and peripheral nervous system firing rates through action analogous to the inhibitory neurotransmitter GABA, and so helps to dissipate runaway or erroneous nerve firing from damaged nerves.

I, too, am curious as to what testing you may have had to determine your condition and what specific causes may have been found, if any--many of us here have had the experience of having to go through long testing/diagnostic processes, often with not very knowledgable physicians, to get some answers, if there were any to be found. With over 200 known causes of neuropathy, and probably nearly as many yet undetermined, this is a very mysterious condition to have, and one often needs to be under the care of people at a tertiary research center to have any progress made.

[mrsD]

disease may lead to malabsorption of nutrients.

People with long standing symptoms have inflammation which prevents the small intestine from working normally.

B12 would be affected, along with many other things.
Enteric coated fish oil (not the regular) has shown benefit for healing.
(a new study showed enteric is better)

http://www.diet-and-health.net/Disea...nsDisease.html

Chemar, our admin, has information to heal Crohn's that is non-RX-drug
based. Her son has this, and is doing well. I suggest you PM her ASAP.

Much of the PN may be due to 1) nutrient losses, 2) drug induced depletions caused by the drugs used.
For example Neurontin depletes B12. And some of the anti-inflammatories used to treat Crohn's may deplete folic acid.

I would also request Vit D testing. With poor absorption and that Neurontin, you may be very low.

[HeyJoe]

while you are having all of that blood drawn you should test for celiac disease . There are specific blood tests for autoimmune markers for celiac. You could also be gluten intolerant. You have gastro problems so its a possibility. You can do a search here for the blood tests, i know that Glenn just posted them again recently.

[lefthanded]

I am really just in the beginning phases of the testing. . . and have not yet seen the results of the latest blood work. Up until now I have had pretty normal range blood values. I will see my neurologist again in mid-May, after my EMG/NCV's have been done. By then we will have blood work results too. I will definitely know more then.


Can I ask, what difference does it make what the cause is if the symptoms are the same? Please don't snicker or laugh at this question. But when it comes to digestive diseases, it is all so personal to the patient (some things that work well for others don't work for one), and all of our symptoms are minute variations on one another's miseries . . . that I have learned not to chase every single rainbow out there. I really am not a pessimist, but just terribly realistic.

[mrsD]

Originally Posted by lefthanded

I am really just in the beginning phases of the testing. . . and have not yet seen the results of the latest blood work. Up until now I have had pretty normal range blood values. I will see my neurologist again in mid-May, after my EMG/NCV's have been done. By then we will have blood work results too. I will definitely know more then.


Can I ask, what difference does it make what the cause is if the symptoms are the same? Please don't snicker or laugh at this question. But when it comes to digestive diseases, it is all so personal to the patient (some things that work well for others don't work for one), and all of our symptoms are minute variations on one another's miseries . . . that I have learned not to chase every single rainbow out there. I really am not a pessimist, but just terribly realistic.

It makes a difference.

If you have pain because something is not working right, and you fix that,
then the pain goes away.
We have a member Crytears who has/had Crohn's, and found she was highly deficient in B12.

If your inflammation heals up with the proper nutrients then you will be absorbing the nutrients your body needs to keep you alive and functioning.

I detect a negative belief system, here. In fact if you are not willing to
take some responsibility for your own healing, you will never get it, because at the doctor's they don't heal, they mask. They will give you drugs to conceal or partially conceal discomfort, which all have side effects. (One exception is autoimmune CIDP--which does respond to
IVIG). And I don't believe you can attempt full restoration either. But you may be able to reduce drugs to a level that do not impair you
significantly. In the stickies there is a long list of drug and non drug interventions to help with PN (both for discomfort and healing).

This board is composed of people who have taken the time to learn to help themselves as much as possible. The rainbows you are chasing right now, are not helping you (neurontin for example), or you wouldn't be posting here.

No one here can make you "believe". (and laughing at you is the LAST thing anyone here will do)
I suggest you start reading here and this important thread should be FIRST:
http://neurotalk.psychcentral.com/thread43699.html