New Member Intro

[Guest guest]

Hello everyone,

My name is ita and I just joined late last week and have just gotten to be

able to sit at the computer long enough to send my intro. I have been happily

married to the most wonderful man in the world now for a little over 10 years

and we have 3 beautiful children who are my life. 2 of our kids are disabled,

the middle one is legally blind in one eye and has some minor learning

disabilities as well as ADD and our youngest one has a chromosomal birth defect

called Trisomy 18 Translocation. He is our miracle baby because

the doctors told us when I was pregnant that we could be assured that he would

be severely disabled and never be able to attend regular classes as well as

being in a wheelchair all of his life. Well, Hunter has surprised ALL of the

genetic specialists as well as our regular doctors because he is NOT in a wheel

chair and other than being very small and having some learning delays as well as

severe ADHD and has a problem with getting ill very easily, he is pretty much

normal, his vision is better than 20/20 and he is VERY smart and the light of

all of our lives.

Now on to me, I have had neuropathy symptoms since I was 8 years old and was

always told that it was all in my head because I was too young to have those

kinds of problems, even once I became an adult and developed other problems as

well as the CMT I was ignored and told " It is all in your head, " which really

frustrated me. I finally had to stop working in July of 2000 because the pain

that I had was preventing me from being able to do the job that I felt I owed

myself and my employer. Finally in December of 2000 I found a new doctor that

believed that my pain was real and diagnosed me as having Fibromyalgia, RSD,

Peripheral Neuropathy and several other things

that I can't say let alone spell and started treating my pain. Even though my

neuropathy pain was never under control to the point that I could function I was

just happy to have finally found someone that believed in me and my pain. So

time passed and I tried returning to work in May of 2003 because we had been

informed that my husband would be losing his job in July of that year because a

multinational company had purchased the company that he worked for and was

moving the operations here in Cumberland out of the country to Brazil. I managed

to keep working until the middle of October but I had gotten to the point that I

had NO feeling in my legs at all and was

falling so frequently that my doctors, both regular and new neurologist told me

that I had to stop working because I was only making matters worse.

I finally had an EMG in October of last year and was amazed to find out that

below the knees and below the elbows on BOTH sides I have no nerve conduction

and my neurologist actually told my husband and I that he was amazed that I was

still able to walk and do other things. My husband told Dr. M that I was just

too darn stubborn to get stuck in a chair and my doctor said that was a good

thing because over the next year or so I could lose all feeling in my legs and

arms.

I am doing my best to keep from losing all feeling because when that finally

does happen I will be looking at losing all of the independence that I have and

my husband will have to change jobs so that he can be home and more than likely

the job will be much

lower paying than the one that he has now.

I hope that this is enough, and am sorry that it is so long.

ita