I want to apologize in advance for the very long and negative post. I know this is actually good news. I am just feeling confused and pretty down right now. To be perfectly honest, I’m not even sure why I’m feeling so upset.
After a 4 month wait, I saw the ms specialist again yesterday. The first time I saw him he was great. He connected the lesion in my brain to most of my symptoms. He said the problems with my leg were coming from a lesion in my spine (spine is clear).
This time he was an hour and a half late, told us what a bad day he was having, and then looked at his watch, and said that he was now going to be late for a conference. I know everyone has bad days, but it was still disappointing after I had waited all these months.
He of course didn’t remember anything about me, didn’t have time to review much, and dxed me with CIS. The problems I have are residual issues from that one attack, and while better, are still disabling to the point where I am unable to work. He did say one lesion can do this, depending on where it’s located.
I am very happy it is still CIS and not full-blown MS, but at the same time I’m a bit concerned. He is an imaging researcher, and therefore puts pretty much absolute faith in MRI results. He said that without a second lesion on an MRI, he wont put me back on modifying meds (was on Copaxone for 9 months when I “had” ms). It does not matter what new clinical signs show up on exam. He did not remember that the issues with my leg (the residual is still obvious on clinical exam) began quite suddenly over a year after my first attack. There is no lesion on my spine, so I don’t know why I have these issues. He was in such a rush that I didn’t get to ask this question, and I am kicking myself about this now.
He does not put his patients on modifying meds at the CIS stage. He said that a couple years ago 1 or 2 out of 10 neuros would begin treatment, now it is 5 out of 10, and in a couple more years it will be 8 out of 10. He, however does not believe in treatment until at least one more lesion shows up, no matter what new abnormalities show up on exam. I am a bit concerned about not being on treatment now since trends in research do indicate starting meds asap (not that I am an expert by any means). I also know I tolerate Copaxone well, so starting it again wouldn’t be that big of a deal to me. I guess I’d rather be safe than sorry when dealing with this stuff, since now he and the mayo clinic have both confirmed the CIS. I am just hoping this will work out okay. I will have another brain MRI in 6 months, and we’ll see what’s up then.
He did put me on baclofen for the spasticity in my leg, and provigil for fatigue. I am unable to fill the provigil because he wrote the rx on the wrong form and didn’t specify the number I am supposed to take. The pharmacy, like pretty much everyone else, can’t get ahold of the MS center.I am not holding my breath on getting this filled anytime soon.
Alright, end of vent. Thanks to those of you who made it all the way though this, lol.