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Re: Peripherall neuropathy

Re: Peripherall neuropathy

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Posted by shammy on March 30, 2000 at 01:40:52:

In Reply to: Re: Peripherall neuropathy posted by Judy on March 16, 2000 at 13:00:29:

After years of telling my Dr's of the horrid burning pain in my feet and legs, along with numbness and muscle weakening, I finally just got a diagnosis of Peripheral Neuropathy! I have been diagonsed with Fibromyalgia and Chronic Fatigue Immune Dysfunction over three years. Last year, after many surgeries to stop a particular pain, and seeing many specialists of various kinds, I was also diagnosed with Interstitial Cystitis....a somewhat rare and extremely painful bladder disesae. All these years, the gnawing, burning in my legs have been passed off as symptoms of the Fibromyalgia and nothing to it....live with it. THis year I developed symptoms pointing towards Multiple Sclerosis as they finally began running several tests. My Neuro recently confirmed Peripheral Neuropathy. He think the extreme muscle cramps and spasms I get throughout my body, but particularly in my legs, from the FMS, has caused the Neuropathy. My muscles knot up, twitch, jump around and have caused the nerves within them to rip apart, thus causing the neuropathy. I also told my Dr's for years that my right foot hurt me terribly and I was again told it was 'just' the FMS. A new Dr. took interest in it and ran an x-ray first thing. Lo and behold.....a huge bone spur, which could have been removed at a smaller stage, but is too large to operate on now. The muscles in my foot are permanently damaged by walking on the nail with a hook type growth on the bottom of my foot. Once you are diagnosed with a little understood illness, such as FMS or CFS, Dr's are hesitant to listen to you and blame everything you mention to them on these existing illnesses. Because of that, and inadequate care I recieved , I now, at age 37 have permanent foot damage and now Peripheral Neuropathy to deal with for the rest of my life. There is NO way to describe how this feels to someone who does not have it. I tell my Neurologist that I feel like one one of those cartoon characters that has hot feet from running and puts his feet into a bucket of cold water.........then steam comes rolling out over the top! I just know if I put my burning feet and legs into a pail of cool water, the same would happen. I've done some research and it seems that sometimes the PN came spread on upward through the body. Some people even have PN in their spinal area as well. My Neuro immediately started me on Neurontin, which I found interesting because many people with another of my illnesses; Interstitial Cystitis; are also given this epilepsy medicine. The Urologists theory of using this med is the bladder lining is raw and nerve endings are exposed with this disease. That's pretty much the way PN was described to me as well. Some people I've talked to taking Neurontin take small doses; 300 - 600 mg. a day. I am on week 5 of working up to a dose of 600 mg., three times a day , or 1800 mgs. a day. I've heard of those taking as much as 36,000 mg. a day for PN or IC either one. My Neuro readily admits that using Neurontin for PN is not "textbook" and it's an off label use of the drug. Honestly, I don't care what the stuff is, what it's made of, as long as it will help to stop this torment of burning and pain. If it helps the agonizing bladder pain as well, even better! I see my Neuro again in 2 weeks and he will make a decision then whether to keep me on this medicine or change to another. So far, I really can't tell that it's helped me any, but perhaps if I stopped talking it, I might see that it was helping alot. That's the only way to tell sometimes; stop taking a med and see what happens. To all of you who also suffer from this horribly painful illness, and those like it, I offer you my utmost wishes of good luck and please keep posting to let us all know what you are taking and what is helping or not helping. Hang in there everyone..........we'll get through this together! :)

: : : My friend is a 28 year old female. She has recently been diagnosed with peripheral neuropathy. She has tingling in her legs, hands and feet. She feels like she is going crazy. The MD prescribed an anti seizure med and this has helped. She has no idea how she got this disorder? MD's are stumped. Any suggestions? She is otherwise healthy. She did have MMR vaccination in 1998. Could this be related? Sometimes PN just happens to people! Often no cause can be found. I know that she's frustrated, but she has to stay as healthy as possible in all other areas!
: My name is Judy, and I need some people with peripheral neuropathy to please write to me concerning their symptoms. I am having extreme pain in one foot and pain in the other foot. It feels like my foot is on fire. I work and I am on my feet the biggest portion of the eight hours. I also have the tingling, but the pain and the burning is the worst. Please, has anyone had any real succes with any type of medicine. Please write to me at JJKHUDD@aol.com. I would appreciate just having someone to talk with. No one understands the pain. "Oh, your feet hurt", they say. No It has gone so far past that state.




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