Did i ever mention on this site that I hate having this disease? Well i do...i really do.
I went to my neuro yesterday to get the results of those 3 MRIs -brain, upper and lower spine. Good news is that I have no additional scarring on my brain. Bad news is that i have 3 lesions on my spine. Now, in all fairness i can't really classify that as total bad news. It explains why I am having so much trouble walking i s'pose. The unfortunate thing is that this is the first spinal MRI i've ever had so we have no baseline to measure against. He is concerned because I have to admit that it has gotten progressively worse over time. It used to be that i would have problems after walking or standing for a long time; now it's almost always ALL the time regardless. PT helps it does, but it doesn't negate the fact that the walking problems have progressively gotten worse. He is concerned (and he raises a good point) about what state i might be in in 6 months. Anyone around me regularly can see how it's gotten progressively worse. So, where does that leave me? he wants to change my meds...
Good news/bad news. The good news is that i will no longer have to take a daily shot (YEAH BABY!!!). The bad news is that the one he would prefer me to go on has a side effect of a brain infection - SHEEEEIT!!!! It's a much more aggressive medication than the one i'm currently on and i've heard great things about it but... really? do they always have to have shit hanging over ur head like that? can't something just work FOR u without all the bloody side effects??? It's also an IV infusion so I'll have to go into his office once a month to get my infusion - HAPPY HAPPY JOY JOY!!!! The cost? haven't a clue but once again, I have to wait to be approved by the insurance company and everybody else in the world before i get started.
The brain infection is rare (thank God!) and it is more likely to occur in patients with a compromised immune system. So they do extensive blood testing and TB testing before you are even considered as a good candidate for it. I've done research and in this instance, i believe that the benefits outweigh the risks and I'm willing to give it a try. He said that we can try it for 6 months and see how it's going/how I feel and re-evaluate if necessary.
Did i ever mention that I really hate having this disease? I know that it's not the worse thing that can happen to me and for that I'm grateful, but i really do hate having it.
Christ! VERY VERY rare I hope??!!
ReplyDeleteOh hun!! ((hugs)) I hope it does what it is supposed to do and nothing more!!
ReplyDeleteoye! I tell u...if it's not one thing it's another...I'm healthy (of course, apart from having MS) so it's less likely that i'll get the infection but at the same time it's still looming out there.
ReplyDeleteSometimes, i swear if i don't laugh, i'll sit and bawl like a baby!
Yo... you are getting me worried...so I guess I'm going to have to make a trip to ATL to see you. Even is just to catch some kicks off of your military walk :)
ReplyDeleteLOL...the military walk is gone - excuse u!! these days it's just a slow smooth walk :-)
ReplyDeleteReading this post was very familiar! I just got MRI results back and got damn near similar results... and have the same push being made towards Tysabri and that awesomely scary "rare" brain infection. The way I look at it, I have really REALLY bad medical luck... so 1/1000 is not really something I feel like playing medical roulette with. ;-) Of course, I say that... but I'm sure I'll end up doing it anyway! :)
ReplyDeleteMy doctor suggested 2 options - Rebif or Tysabri...to me, Rebif will be just like the Copaxone that I'm taking now, so I'm willing to try something more aggressive. It's the trial and error and NOT knowing that I really hate about all of it!
ReplyDeletethe military walk- i almost forgot about htat! :) your friends, i tell you!
ReplyDelete