You can request a copy of your records from your neuro's office...I'm pretty sure that's how just about everybody knows all the intimate details of their particular dance with MS...
Just my personal experience, for what it's worth...
I had the same thing you describe as 'MS lite' for 23 years...then I started taking Copaxone (just because my neuro made me feel like I was not doing everything I possibly could do to help myself). Took it for 2 years and THAT was the beginning of my downhill slide...I felt terrible taking it and I got new symptoms, worse symptoms from which I never fully recovered...so I quit Copaxone and tried Avonex...I felt worse and got worse for 2 more years...if I had it to do over, I definitely would NOT take those drugs (or similiar ones) again...I wish I never had started them!
But, apparently, just like the disease, the treatment(s) react differently in everyone, but both suck...
Lisa aka, CNClear
dx 1983, almost 51
Scheduled with Dake Dec 8 & 9
Sigh. 1983. What a year that was! We just moved here from Saratoga near San Jose. When the plane flew into LAX we couldn't even SEE LA for the smog. Yuck. I got an instant asthma attack when we got off the plane, before I even had asthma lol. Sorry you had such a bad experience with the drugs. I avoided them for a long time, "out of sight out of mind". But I knew it was creeping creeping creeping. Not denial really at all, more of a "aint broke don't fix it" procrastination, all scientific arguments aside. Anyways finally after enough flareups the time had come, and my insurance paid all except the stupid delivery fee and per diem so it was like 100 bucks a month, not too bad all things considered. Cept my insurance has a cap on that portion which fell under "home health care" so I would get like 2 years max then no mas. Decided the 1 a week shot was easier so started on Avonex, wifey the super-squeemish one admin'd the shots for me, what a trooper God bless her heart lol. We made a family affair out of it so the kids wouldn't get scared. Savannah would "prep" my arm with a wipe, Hailey would open the package for me, then I would do the needle part then Suzy gives the shot. Figure it's good for the kids too, to just put it all out there instead of being scary and mysterious. Thing is, couldn't get over the side affects, even after doing for months it just took me out for an entire day. Wonderful. So what happens when we work overtime then what? lol. Anyways mister non-compliant here has a months supply in the fridge you can have it, not even my neuros office would take it off my hands for free.
Well this is good to see you getting in after having this for so many years. I wonder why you progressed so rapidly after the shots. Gee, didn't see THAT in the literature
. I can probably just call the girl at the neuro's office, she's super cool. I owe em a copy of my follow up MRI anyways. I'm the test-bunny for the office haha.
Sometime last year I decided I'd rather be invalid than take any more of that nasty stuff. So CCSVI came along in a timely fashion for me. SERIOUSLY.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap