I'd like to hear about your experience and i have a few questions...
 

Hi everybody. I am new on this forum. I have been reading some peoples posts and i am so sorry to read some of you are going throug so difficult situations, i will include you in my prayers. On the other side, i also find it comforting to hear people are going through similar things i am. I would like to ask you some questions and to know about the evolution of your neuropathy, i am not a native english speaker so sorry if i make any mistakes.

About a year ago I started experiencing weird sensatiosn in my legs, they would go numb, i felt some tingling, i felt something walkimng in my legs, something moving in my legs as if there was a worm sliding through my legs, then i felt contractions, then i would feel extremely tense.... after a month of experiencing this everyday i thought it was not normal and i went to de neurologist. At the begining he thought i was "resteless legs syndrome" but then RLS was ruled out since i can sleep well and have no need to walk or move. Then the doctor had me take all kinds of test until i got a Nerve conduction test and velocity test. The result was a demyliating (don't know if it's the right spelling) polyneuropathy. The doctor said it was a mild one, probably due to a vasculitis. He prescribed corticoids (prednisone) and i have been taking 60 mg a day for three months. I haven't experienced much improvement. I still have the sensations in my legs. I feel muscle contractions, tingling, now i have some fascicullations and my toes move by themselves, sometimes i can feel and see me muscles "jumping". These sensations are not painful but they are terribly irritating, i have had difficulties to concentrate, they make me be in a bad mood, and worried because it's been a year and i haven't gotten rid of these sensations. I was planning on moving to France (I live in Mexico) but i have decided to postpone it because i do not know how this is going to evolve or if this will get worse. Also, i have been a bir depressed because i no longer enjoy life as i used to, i feel scared and fearful thiking this is going to be bothering all my life or it's going to become worse. I have also gotten many side effects from the corticoids (weight gain, moon face, acne, mood changes and terribly hungry). Sometimes i feel desperate, hopeless, angry and deeply upset. I am a student, i need to write many papers and read, i have had a lot of trouble concetrating and getting my work done, because these sensations are always there. I know some people here experience much more painful things. I don't mean to sound insensittive to your situatons, but this situation of mine is really disturbing me and i need to talk about it because my loved ones firstly don't understand what i feel and sometimes i think they think i am exagerating. With my friends i avoid talking about this because i don't want them to get tired of listeting the same things, and i don't want to sound like a baby.
I would like to know what you think of my case, if you experiencend something similar and then improved, if you have any recommendations, anything, i am willing to try anything.
I have considered hyperbaric medicine, what do you think about this?
Is there any medicine that you can recommend?
Thank you so mucho for reading me.
Monica from Mexico.

Hi Monica & welcome to the forum,
The Neuro saying " probably vasculitis " is not a neuro i would want to treat me, they should be looking for the cause, you need a neuro that specializes in PN.
There is a lot of tests that a PN expert can do to try to find the cause - http://www.lizajane.org/

There is a lot you can do to help your self.
Also this site about b12, which helps to heal damaged nerves;
http://roseannster.googlepages.com/home

Also check out Wings 42 " A program to heal nerve damage and reduce PN symptoms " http://neurotalk.psychcentral.com/sh...p?t=177&page=2

With medications, its a bit of a trial and see, sorta thing, what may help one doesn't necessarily help another, but there are plenty of meds out there they may help you, i think its wise to ask the doctor if they have any sample packs they get from the pharmaceutical companies, before you go and buy them and then you may find out they might not be suitable for you.
I don't no much about hyperbaric oxygen therapy? maybe someone else here can help you with that.
There is a lot of kind, caring, and very knowledgeable members here that do understand exactly what you are going through and i am sure they will be along shortly to try to help you.
Good luck,
Brian :)

You got some good advice. Find a neurologist for a second opinion, one who is interested in searching for a diagnosis. Also, hyperbaric oxygen treatment has been researched and found ineffective for peripheral neuropathy. But first, you need a good diagnosis.

I can only urge you to...
 

read up about polyneuropathies- there is a good deal of info sited at the top of this forum in the 'Stickies'. Any other site that is referenced in BLUE, just click it on and READ.

Having a PN of any kind, no matter the cause is extraordinarily scary. Learning about what all is happening to your body, and getting a grasp on what makes the pain worse can help you modify your life and your mind to limit the degree of pain you experience.

You will find that most of us here really have issues dealing with the pain itself or the treatments [mostly drugs] used to ease the pain. It's all a trade-off in terms of finding right doctor then, the medications to make the best of one bad deal.

I also, would urge you to obtain copies of your medical records and see where you stand in the extent your doctor screened you before coming to the diagnosis he/she has. Look closely at www.neuroexam.com and www.lizajane.org The first site is for an overview of diagnosing neuro conditions, the second site for a majority of the testing variables that could be explored.

The very worst thing is to let the FEAR of it all get the better of you. If you do, things can only get worse. Have faith.

I agree with the other comments that a second opinion, especially in light of your apparent increase in sensory loss. The depression can be a result of the pain meds and/or just being in pain! Another doctor might be more willing to help you find medications and treatments that could work out better for YOU!

Let us know what you do, please, ask questions, and share... - j

Hi Monica! I'm tagging along after Brian's post because I wanted to say that the B-vitamin therapy *does* work. It's working for me. It's worth checking into and cannot make your condition worse in any way. Taking B-vitamins is not dangerous either. As are some of the drugs doctors want us to take to treat some of these disorders.