First time here, so "Hi". I had my first relaspe since diagnosis and treatment started in 2001. I was/am on Avonex. I have not improved but in some ways am getting worse slowly since my relapse. In February I finally stopped working as a Teacher's Aide, after talking off tons of sick days going back, taking off, yo-yoing. I also injured my siatica so, I was on leave for a little while for that, and was able to hide the truth from myself because of it for a while. It has been hard, even worse when I was first diagnosed. I got on Avonex just in time I think, as I was having so many relapses so close, and loosing some of my ability to walk, and was needing a cane and when shopping a scooter. I improved so much with the avonex that I was able to pretend that I waas okay sometimes, only those who knew me well, knew what was wrong. Although I never hid it, as i told most people I had regular contact with about it of rwhen I had those moments or days, so they din't think I was some sort of freak. Most of my problems have been in cognitive/memory and commmunication, physical over the years was mostly clumbsiness, shaking, spasms, with a heavy leg feeling when tired. Fatigue was big for a while, but until the last relapse it was controlled by a drug I have lost the name to. Now I am off owrk for a while longer as I await confirmation of tysabri and hope that nothing happens while weaning off Avonex once I know when I start. I am taking anphetimines (sp? - aka legal speed) and that has taken me out of the fog I was in and help some other things.
Anyways - to my point. My husband and I had a major greiving period after finding out the Avonex wasn't working and my only real hope of functioning again was tysabri. Only heard about it then so we. First time that my MS really brought me down and made me cry. I had always tried to be possitive about it, that it was a blessing in disguise, making be stop the extras and focus the important things - family. We would laugh about my "MS moments", etc. This relapse really scared us both, and our families (those we were related to but live far away and our "chosen family" of close friends where we live). I have been feeling more in control and more positive about tysbri's chances of helping me, as I was going through the motions of getting things set up, but now I really feel hopeful, seeing the diference it is making for others, and am looking forward to starting. Thanks!
Sorry so long - the speed makes me a little chatty at times!
I look forward to being part of the "group".