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.
I had to go back to my neuro on Friday for them to read my TB test results. I didn’t actually have to make an appt for that because quite frankly i swear anyone can read those results. I could have called them and told them that I didn’t have TB. Anyhoo, so i just had to go in and get it done. Well long story short, I was running late…so I got to the doctor’s office with 5 mins to spare!!! The office is up on the 5th floor of the building and luckily G was with me so I didn’t have to park. I pulled up, got out of the car and G screamed, “5 minutes! no pressha!! but RUN!!!” i think it took me the entire 5 minutes to get upstairs because naturally I tripped right by the door of the building – didn’t fall, but i had to steady myself before i could continue…
