A few weeks ago I went into the office for an on-site meeting with a project partner. I like the guy. He's an engineer who consults for biotech firms. He's kind of geeky but in a cute, social way. At the start of the meeting, before anyone else joined us, the guy said, "Hey, I heard you have MS."
When I stopped laughing, I managed to mutter, "Ya...um...ya." Then other people came into the room, the meeting started, and we moved on to work issues.
As you all know, I am all out there with the MS. So I wasn't mad or anything. It just struck me as really funny that he would a). know; b). care; and c). say something about it in such an offhand way at the start of a business meeting. I didn't mind exactly and I definitely preferred his tone to the whole pity response.
So, that was it. Then, last week he gave me a call and asked me if I minded talking to him about my MS. I assured him it was fine. I did wonder, but didn't ask what prompted his interested. I just assumed that his wife or sister or someone had just been diagnosed.
It turns out that this guy is very involved with MS research and education. I'm not sure why he's aligned himself with this particular cause (I've made up a back story about a disabled mom who was diagnosed with PPMS before any of the disease modifying drugs came along, but I have no confirmation).
He is on some MS board and knows the head of a world-renowned MS Center in Atlanta, GA. So, during our conversation, I found out some shocking, new information about how Tysabri has been proven to help people with optic neuritis and has even shown some reversal of optic nerve damage. And, apparently the risk of PML--a rare brain infection you can read about
here--is greatly reduced with the help of a new blood assay that tests immune competency and a virus that is present in more than 60% of those who get PML.
So, the thing is this. I am not a neurologist. I cannot and would not prescribe myself Tysabri or any other medication. But I asked my neurologist about Tysabri about a year and a half ago--before my vision deteriorated to the point that I stopped driving.
The first time I asked about Tysabri, it was after my first or second vision with my new neurologist when she told me that I had more lesions on my MRI and that she was thinking about prescribing me something other than the Rebif. I said, "I've been reading about Tysabri."
Her response: "We don't prescribe that here." Clear as day. I assumed the "we" and the "here" were the MS Center where she practiced.
A month or two later, however, I was in the MS Center's infusion center getting my monthly Solumedrol infusion, and I met a woman who was there getting a Tysabri infusion. I was disturbed and a little angry but I decided to trust my neurologist and to see what the next MRI looked like.
So, I waited. And then, the next MRI was this fall and I went through a bad patient rebellious phase and didn't make it into the neurologist for the follow-up appointment until December. Again, I heard that there were more lesions and that she wanted to make changes and treat my MS aggressively since I am relatively young and not at all disabled. Again, I asked about Tysabri. This time she said, "No, I don't prescribe that."
So, I decided to put on my big girl shoes and confront the issue straight on. "Um, the last time I was here, " I began, forcing myself to look the neurologist straight in the eye, "You said 'we don't prescribe Tysabri' but, in fact, I know there are patients who are getting it right here in the Infusion Center."
"You must have misunderstood," she responded. "I never said that you couldn't get Tysabri here, I said that
I would not prescribe it. The risks of PML are too great and I don't think it would be responsible."
I didn't misunderstand. I know I didn't. I also know--now--that the Rituxan she recommended as the alternative, more aggressive treatment is not even FDA approved for MS and there is a risk of heart issues and the drug would, kill all my B cells and basically kill my immune system.
So, I've decided that I need a new neurologist who treats me like a big girl who is smart enough to handle all the information and make my own, grown-up decisions about my own disease. I do not want a doctor who picks and chooses what to tell me and whose bag of MS treatment tricks is fully stocked with all the options.
I have an appointment later this month with another neurologist at the MS Center. According to the patient coordinator I spoke with, this guy prescribes Tysabri and all the other MS medications. In other words, he is in possession of the full bag of tricks. I'm going to talk to him about the new information I've received and see if Tysabri is right for me. And then, if he recommends it, I'm going to take the blood test to assess my immune competency and the presence of this virus to see, if I'm in the high risk group for PML. And, if I end up taking Tysabri and my vision improves, I am going to write a letter to the director of the MS center and to the Central New England chapter of the MS Society, and complain about the other neurologist by name. How dare she treat me like a stupid child. It is MY disease.
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