Hi my name is Rhonda, I have peripheral neuropathy celiacs disease, my neurologist started me on Neurontin about a month ago. I find as long as I take it with food I don't get the zombie feeling quite as much. Beings that I have celiacs disease (allergic to wheat,rye,barley,oats and everything must be gluten free) it is not easy to find a medication that I can take. My neuropathy is progressing and is lasting longer. Does anyone out there have any insight? Any information would be greatly appriciated.

There is a whole forum here for Gluten/Celiac sufferers.
they most certainly will have answers for you

http://neurotalk.psychcentral.com/fo...aysprune=&f=13

Hi. I am back again on the upping/adding/changing meds. In the past I had side effects or they did not help. I am now trying to give it longer and also push through the annoying side effects of course dangerous ones can't be ignored but anyhow sometimes they do pass and I adjust to the next level.
Fl sunshine I wear every min I am up nike walking shoes. I have a friend who really like New Balance walking shoes. For me I need adequate support or I feel like I have broken ankle and knives in my feet.
Rhonda sometimes the meds take time and I wonder what dose you are on as neurontin I have been told takes getting to a proper dose for better pain control. Also how long have you been on your gluten free diet cause I would think it can take time for your body to repair.
Hloutos I am sorry about your mom. I am not that familiar with sjogrens though I had a lot of the symptoms of this and PN. You said your mom has tried those meds but has she went to see a pain anestesolgist? I would suggest that as there may be alternative treatments or procedures they could do other then meds since she is not responding. I am not sure where you live but I would call a major hospital in your area and see if they can guide you. Hang in there as support for your mom but also for the family is key. I know how this takes a toll on my mom and of course myself but one can't give up hope.

Hi

I am a new member and as a physician have extensive experience with patients who have peripheral neuropathy.

You should realize that peripheral neuropathy is only part of a diagnosis. It basically means dysfunction or disease (pathos) of the peripheral nerve.
It can be caused by chemotherapy (particularly taxol and cis platin or carbo platin)
, alcoholism, high lead levels, vasculitis (inflammation of the bloodvessels) of the nerves, diabetes (diabetic neuropathy), vitamin B deficiency, compression of the nerves (compression neuropathy) or a combination of the above.
The symptoms of peripheral neuropathy can also be mimicked by a central nerve compression (like a herniated disc in the neck or back (lumbar spine).
The best strategy to help patients with peripheral neuropathy is to make an accurate diagnosis, optimize the patients’ metabolic problems and decompress the peripheral nerves at places of narrowing if indicated.
Peripheral nerve decompressions are performed by only a handful surgeons in the country, typically plastic and reconstructive surgeons who have specialized in peripheral nerve decompression. They will be willing to decompress your peripheral nerves only when they feel that your symptoms are the result from a compression neuropathy, because a surgeon can only improve a mechanical compression of your nerves and can not alter a metabolic problem with the nerve.
However, sometimes patients can have both a metabolic nerve problem as well as a compression of the nerve. For instance a diabetic with diabetic neuropathy can have carpal tunnel syndrome as well, and a decompression of the carpal tunnel would help the patient greatly with his or her symptoms, although it would not change the diabetic neuropathy part of the problem, only the compression neuropathy part of the problem.
Sadly most physicians are only willing to treat patients with medications like neurontin and lyrica, which treats the symptoms (sometimes) but does not change the cause of the problem.
Also many physicians are not very well educated about the additional options and studies which have been published in several centers showing the progress that has been made with peripheral nerve decompressions. In patients who are good candidates 85% has an excellent outcome and no longer has any pain, or greatly improved pain symptoms.
**
dr swier

Welcome dr. swier,

There is also Charcot-Marie-Tooth Sydrome (CMT) which is the most common "inherited" neurological disorder. It affects the peripheral nervous system (PNS). You probably are aware of this.