Sos remember i started out on copaxone. this did not work for me back in 04. Rebif did work, but then caused depression in 09. so i stopped rebif. Right now i am faced with this decision:
stay on rebif, with major depresion, or
go on cpaxone, with the risk of it not working again, or
go on the new IV drug, which carries a 1-1000 risk of a brain infection (incurable) Or
do no meds. Thats is what i am doing now, and of course experiencing an attack of optic neuritis becaue of it.
SOOOO i will be starting copaxone soon. This was my plan all along, but it has taken so long to get it started, that while in limbo, not on neds, i had aquickie attack.
I liked copaxone becaue it had no side aeffects, (flu, depression, like rebif) and did not hurt so much to inject (the shots of ocourse hurt, bu the medicine doesnt. Rebif really hurts going in, burns.)
SBut of course the copaxone didnt help my mS while the rebif really did. I kind of have litlte choice, but my neuro says that the copaxone might just work now, so we'll see.
Monday, November 2, 2009
forgot about the other mahjor steoid dose
back in 2004, i was taking 10000 mg of steroid a day (in the form of 20 pills) one day a month for 6 months. This was to shock my system into remission.
It did not work. Sos i then went to Boston, got my 2nd opinion, and so on and so on.
It did not work. Sos i then went to Boston, got my 2nd opinion, and so on and so on.
Rebif FAIL
So after my 3rd child (born june 2009) was born, i went back on rebif. This cause MAJOR depression for me this time around, so i had to stop it after 2-3 months. I was breaking down from the depression and anxiety, and starting to contemplate suicide.
i considered going to half dose, but the depression was still too strong, so i stopped it altogether, after discussing with my neurologist.
ABout 5 days later, i lost quite a lot of vision in my left eye. Well, dear reader, you may remember that i lost 'quite a bit' of vision in my right eye earlier. So now i am about even, which is pretty miserable for seeing n stuff.
So i went on oral steroids, 400 mg spread out over a week or so (this is abotu 20 times the normal dose.) STeroids make me very cranky and combative, and not at all muscular. BUT they are helping a bit with the healing, i can read text a bit now, but it is still very hard to read text whether on papaer or a backlit screen. But i can manage, and do most anything i need to do, just through a haze of static.
i considered going to half dose, but the depression was still too strong, so i stopped it altogether, after discussing with my neurologist.
ABout 5 days later, i lost quite a lot of vision in my left eye. Well, dear reader, you may remember that i lost 'quite a bit' of vision in my right eye earlier. So now i am about even, which is pretty miserable for seeing n stuff.
So i went on oral steroids, 400 mg spread out over a week or so (this is abotu 20 times the normal dose.) STeroids make me very cranky and combative, and not at all muscular. BUT they are helping a bit with the healing, i can read text a bit now, but it is still very hard to read text whether on papaer or a backlit screen. But i can manage, and do most anything i need to do, just through a haze of static.
spaghetti legs
about 6-8 months after the birth of my second child (born nov 2006), lesions on my medulla caused my legs to collapse, so i need a cane. not ALL the time , but on hot days certainly. Also, it cause palsy in my eye , so i have severe double vision. I have a strong prism in my glasses to help with that.
Chemo/2nd opinion
in Feb 2005, i heard from the neuro that my MRI looked bad, the Copaxone was not working, and he wanted me on chemo for a year. i wanted to have another baby , so we got a second opinion, with his blessing. he ssent us to Haarvard Medical school MS center in boston. they took a look at my ccase, said 'take rebif for a few months, repeat mRi, and we'll see:" so i did so, and rebif worked. So i went off rebif and conceevied my second child by the following february,.
Blindness Sept 2004
i lost vision in my right eye in sept 2004. all vision in right eye gone, like a white explosion of light. Took IV steroids, iteventually got better, so that i have like 85% of my vision in my right eye. it is still very hazy tho.
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