Monday, July 22, 2013

I WAS DIAGNOSED 20 YEARS AGO & HAVE ADVICE FOR NEW MSers

(Berlena Spencer-Staton, Columnist, MS News Channel)

This morning while looking in a chest I hadn't been in for a while, I found a journal I started when I was first diagnosed with multiple sclerosis.

I started out with one injection called avonex in 1999, and I listed every side effect I felt from the injection, even having a tightening in my chest. I had tremors really bad then, and there was an entry on February 15, 1999 that I felt as if I couldn't go on.
I talked to avonex support and my doctor, and the feeling passed pretty quick. March 3, 1999 on a Wednesday night, I was asleep, but woke up and had an awful feeling that something bad was going to happen, I started having tremors pretty bad. I stayed on avonex for 2 years and was switched to another injection (copaxone). I listed the burning I was having in my legs, the aches and pains, the numbness, the clicking in my ears, not being able to taste and feeling as if I had gum stuck in the top of my mouth, being out of work and being offered a job and wondering if I would be able to do it, having to do a 5 day infusion of solumedrol and taper off with prednisone and having a bad trip (mental) while tapering off, and the falls I had.

I was amazed to read all of the different things that occurred early on when I was diagnosed. I'm sure at that time I felt as if this was to be the norm for me the rest of my life, but it hasn't been.

I still use copaxone, I use a cane, I can't wear heels, but I try and find cute flats, I still get burning pain in my legs and feet, my right hand is numb, but so many things that I experienced early on, I don't get now.

I just wanted to share this with some who haven't been diagnosed a long time and have experienced and are still experiencing difficult side effects and changes.

I know that each person's M.S is theirs and can be different, but I just wanted to share.

Almost 20 years after being diagnosed, I try and live my life to the fullest and thank God everyday because it could be worse!!!