Thanks Gretchen and John! Gretchen, that's exactly how I feel about the steroids.
I went in to the ER because my face was numb, and my vision just slightly off, but I wasn't in pain and really could have just ignored it and gone to work the next day. But since I thought I might be having a stroke or something, I went into the ER. They immediately put me on the steroids without really explaining anything to me, told me it was standard protocol. The doctors at the hospital just kept telling me that the neurologist would explain everything to me.
The neurologist on call is the one that diagnosed me - based on MRI results (5 brain lesions) and spinal tap results and the fact that he thinks a funny vision episode I had in 2008 was actually my first episode (I didn't see a neuro at the time, saw an eye doctor who saw nothing wrong and it went away on it's own after about a month). He showed up a day later and spent only 5 minutes with me. He pointed out the lesions on the MRI and said it looks like MS. Then he just sent me home said "Don't google anything, don't worry, I'll see you in my office in a week" and told me I could go back to work the next day. He failed to tell me what to expect from the steroids (I felt GREAT when I left the hospital, I was "euphoric" then hit a wall the next day) so at home, I thought the effects from the steroids were actually my "MS episode" getting worse. I've never felt so bad in my life. When I tried to call him, he was quite rude, and honestly I could barely understand his accent. He recommended I go to Johns Hopkins since they have a neurology floor and people with MS as their specialty (not one of his specialties apparently). It was clear he just wanted to get rid of me as he had determined I was going to be a whiner.
So I went into Johns Hopkins where they treated me with another 3 days of steroids and this time gave me prednisone to taper off at home. But the only symptoms I had was a numb face, slightly "off" vision (hard to explain - sort of a halo/flashy thing going on), and some tingling appendages. They never said that the steroids was an option. I assumed that the steroids was necessary to stop the flare-up going out of control and paralyzing me or something. I didn't understand why when I left the hospital, my face and vision were exactly the same as when I first went in. So I ended up missing two weeks of work because of the steroids, not because of the MS attack. So, now I realize, if I had known I had MS and this was just another flare-up, I would have never gotten the steroids and just would have continued my normal activities. I wouldn't have missed two weeks of work (and now everybody knows there's something up). I guess it was good in that I at least got a really quick diagnosis, got all my MRIs, spinal tap, etc.. done while I was in the hospital. As far as getting a good MS specialist - so I found one that is very well recommended at Johns Hopkins and was able to get an appointment the end of March. It seems like a long time to wait, especially since I have a million questions, but everybody tells me I was really lucky to get an appointment with this guy that soon. So, if he's that good, I guess I'm willing to wait. I'm a little worried about not starting treatments for a while (even after I meet with this neuro, I understand it's a long process) - I mean, what if I have another relapse and it's a bad one that could have been prevented had I taken the copaxone or whatever?
Funny - I had a nightmare last night, that my arm went numb and my Mom insisted I go to the ER. When I showed up, my arm was just tingling and I told the doctor that I thought it was okay, and would just rather go home. She insisted I have the IV steroids. I told her I would sign something that said I was refusing medical treatment because I did NOT want the steroids. She wouldn't let me! Strapped me down and put the IV in my leg (for some weird reason) so I couldn't move. I was really mad.