Tuesday, January 23, 2007

MS stories

I was 17 when I was diagnosed in 2000, I had it for a year or two before then cause I remember things that happened, I was just stupid and young and ignored what was going on because things would go back to normal. I was put on Avonex when I was first diagnosed and then after a year upped that to twice a week, that still didn't work well so after a year switched to Rebif.
Had to quit college in 2003 so went on SSI (basically for the insurance part since I quit school I was no longer on my dad's). Had to start using a cane sometimes then in 2004 I got pregnant (not planned) so stopped the rebif and only used that again for about 6 months after my son was born cause I just kept going downhill to having to use a walker..
Went and did solumdrol every month but stopped that cause it's to hard to deal with I get poked like 3 or 4 times till they find a vien, I don't eat anything while I'm on it and I'm basically dead on the couch till it's out. So stopped doing that (don't remember how long I did that for) Then I did Predisone everyday (my choice to try) and switched neuro's to one who deals with more progressive people he stopped me doing that and put me on 7.5 mg of methotrexate then upped it to 10 mg and to drink 1 gram of soulmedrol every month and then upped the methotrexate again to 12.5 mg a couple weeks ago and stopped the soulumedrol. And then also do 4o mg of baclofen for the stiffness.
So right now me and my son still live with my parents and I am using a walker all the time (can't really do to a wheelchair cause there is no room in the house to manuver it but that way it keeps me walking and not giving up on that) But I don't really go out of house anyways cause my legs get so weak when I walk around a lot.
Ways I manage it are to just rest my legs when I need to and to stay cool in the summer cause the heat really wears me down.

XXXXXXXXXXXXX <xxxxxxxxxxxxxx@yahoo.com> wrote:
Hey everyone, I don't post all the time but I just wanted to know how everyone was doing. I have a couple questions too.
I was just wondering when were you all diagnosed and how is your MS progressing? What meds are you on if any? And other than meds how do you manage your MS?

For me I got diagnosed May of 2005. So far it seems as though it's not progressing that fast, even though I can kind of sense when I'm going to hav ea flare up. I had numbness adn muscle weakness in May of '05 and that was it. Other that that I get bell's palsey every so often, and I get optic neutitis. I'm not on any meds as of right now. I'm waiting on my husband to switch jobs before I start. I'm still really scared about starting. Mainly because I'll have to take a shot everyday. My dr. wants me on copaxone. I don't really know how I manage my MS. I have 3 kids ages 5,3, and 2, a husband and 2 dogs. So it's hard to not get stressed out every now and again. But at the same time they are my support and the reason why I'm not going to let the MS rule my life.

Well come on everyone, tell me yours!!

0 Comments:

Post a Comment

<< Home