Sunday, June 22, 2008


Okay, by now most everyone knows that I have multiple sclerosis. It sucks. It really sucks. The worst part of the disease is finding a medication that will help me. I take a bunch of pills- to help with the pain, muscle spasms, to keep me awake, to help me to sleep, and to help with the depression. The medication to actually modify the course of the disease- THAT is the problem. There are 4 standard injectable therapies. I have taken 3 of them. All of them have done nothing! Everytime I go in after being on Copaxone, Rebif, or Betaseron...there are new lesions on my brain and spine. That essentially means that those medications have done absolutely nothing to help me.
This brings us to last week. Last week, I saw my brain doctor. He informs me it is time to start the drugs with the bigger problems. By bigger problems I mean- death, brain infections, liver failure, melanoma, leukemia, weakened heart muscles...need I go on? My choices include- CHEMOTHERAPY or TYSABRI. Chemo works to mess with your immune system enough to kinda trick your body. In MS your immune system is attacking itself. Chemo has been around for years and years- but you are only allowed 9 doses in a LIFETIME. So my doc thinks that this would be a bad option because I am so "young" and the problems involved with the chemo are not pretty - oh and it may make you sterile. Well, in my case that is not a problem- my little tubes are tied!
This is how we chose Tysabri. Tysabri has been on the market for 2 years. No one knows what will happen to you after being on it for more than 2 years. I guess that it had been on the market a while ago, but 3 people came down with PML, a deadly brain infection. The FDA pulled it off the market. Well, my doctor seems to beleive in this drug enough to prescribe it for me and some of his other "hard to treat" patients.
I have only known that I have MS for a year and a half. I am worried about what the permanent disabilities are going to be. I am walking with a cane, I have a handicap permit to park close to wherever I need to go. The hard thing is I do not look "sick". I am happy that my looks are not failing- but sometimes I wish I looked like I felt, so prople would understand what it is like to live like this.
I slept 8 hours last night...woke up fed the kids, and had to take a 4 hour nap becuase I could not keep my eyes open! Exhaustion is the biggest struggle lately. I want to do things but my body will not let me. I am embarassed by how tired I am all of the time. It is a hard thing to get used to.
The physical symptoms are easier to deal with - sometimes anyway.
Time to make some dinner. More to follow.


t319 said...

I am due to schedule my first tysabri infusion within 2 weeks. Very nervous... Ill write back in 2 months.

Tina Posch said...

My neuro is considering tsabri...only he hasn't told me yet. running the obvious lab tests leading up to it: jcv antibody test. So I'm doing this search on google about tsabri and up pops this blog. I'm sorry t319 didn't give update after 2 months. Crappleberries. Hope things worked out. I'm nervous. MS SUCKS!