It was time to find a new doctor that would FIGHT FOR ME and listen to me. After seeing several local doctors, I ended up going to Chicago to see an MS specialist. I live in a small city in Illinois, (you know the kind where the number of livestock out number people?) so this was gonna be a helluva trek. One and ½ hours each way. After getting approval from my insurance company, gathering 50 lbs of MRI films, and my ginormous box of medications. I headed off to see “the wizard”.
When I entered the hospital, I was overwhelmed by the number of white coats running around. Let’s not talk about the fact that most of them looked half my age. (I’m still getting used to the fact that the doctors with the newest technology are younger than me. When I was growing up the same doctor that delivered you took care of you until you died or they died …..whichever came first)
Thankfully there are many better ways to choose a doctor now.
This is the point that I was introduced to Tysabri. I thought I was overwhelmed by the number of doctors? That number was nothing in comparison to the amount of information I received. What sticks out in my Brain is :
DOC : Tysabri or Natalizumab is the newest strongest drug on the market for treating MS. It has even been shown to help reduce lesions, thereby reducing disability. Some people have even been able to walk again!!!! ( And all the other sales pitches out there.)
Grace: Ok, so what’s the catch? Why isn’t everyone using it? And why haven’t I heard of this before?!?
DOC: Well, there is a small chance that taking Tysabri can kill you.
Grace: STUNNED SILENCE
Doc: But the risks are low, only about 1 in 1000 people have “caught” the brain virus that leads to death.
MORE STUNNED SILENCE, maybe some drooling?
Doc: Grace looking over your MRI’s and prior medical history, Betaseron is not doing an adequate job of controlling your symptoms. Having to take steroids 3 times a year is not well controlled you’re spending more time in a wheelchair than you are out of it. You’ve told me yourself that you have watched other family members die from MS, don’t you think this is a better choice?
Grace: blank stare
Doc: Why don’t you take this reading material home with you? There is a lot of information available online as well. I think you will find that this is your best hope.
In 2009 the information I found about Tysabri was:
- Tysabri was the most aggressive form of medication available to slow the progression of ms
- You didn’t actually “catch” the brain virus which was called PML
- Your risks for developing PML were stronger if you had had a lot of chemo or steroids in the past.
- They would be testing your blood frequently and doing MRI’s to look for changes showing the development of PML.
Not enough information to make me switch yet.