NeuroTalk Support Groups - New Here with MS, possibly Devics Syndrome.

Hi. I just wanted to say hello to all the members on this forum. Hopefully I can manage to post more here than on all of the other forums that I was a regular member of in the "normal" world. I just don't feel like I am part of that world anymore, so for now am on forums dealing with my health concerns. I suppose I'll work my way back into the "norm" eventually, but really, normal is so overrated.

I'm only on one other forum for Multiple Sclerosis currently. I'm on Rebif for the moment, and am currently diagnosed with PRMS which is a form of progressive ms, with bad flair ups that I usually never completely recover from. Although I only got my diagnosis in March of this year, my diagnosis was based on over 15 years of medical records and misdiagnosis. My progression for the past 5 years has been fast, leaving me with horrific swallowing difficulites, breathing problems, both hands atrophied, and walking as if i were drunk. I'm sure some of you here are experiencing similar or worse.. so no pity please. I"m thrilled to be alive. My mother died of a hereditary liver disorder that my father can't remember the name of. I was just glad that I don't have that..that i know of anyway. My liver looks great so far.

I've come here for insight as my symptoms haven't been quite matching up with the "norm" of MS, whatever normal is with ms. lol.

My Neurologist has noticed my progression, and has sent my blood to Mayo for analysis to see if i have an ms cousin known as Devic's Synrome, which is like ms with a slightly poorer prognosis. For now we're still using Rebif to stiffle the flair ups that i get.
My first symptoms were .. exhaustion , swallowing problems, and heat sensativity. I also had bad cognigtive problems which have been steadily progressing since i was 13. Breathing problems fallowed. Sometimes I can't swallow anything and begin hallucinating from dehydration and need IV's of fluids.

This past February, my legs started getting tingly.. when I woke up the next morning, they didn't work anymore. I gained my mobility back, but with a horrid stagger and a stumble. the numbness crawled up my body and went to my fingers, which are still unusable except for my pointer finger and thumb on each hand.

Now my throat is tingly, and when I breathe, my lungs tingle.. some days I can't inhale ciggies. I quit because it became pointless.

I also have asperger syndrome. I was born with that, so am quite use to it now.

I just came to meet some people and find some answers. Maybe someone else with my symptoms that can relate??? lol.

The msaa sent me some free cooling equipment, and when I sleep in it i no longer throw up every morning.. i'm so happy for that. I don't sweat anymore either, so heat builds up in my body which has caused numerous adhesions in my abdomen which had to be removed by laproscopy.. (not fun) .. but now they are gone, I'm nearly pain free. Just numb lol. My legs and hands no longer feel like my own, but I can still move myself about, and type, so I feel that I am very blessed.

Nice to meet you all.

Love Noidy. :o