Wednesday, February 03, 2010

Hey, I heard you have MS!

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, "" 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.


  1. Hi Julie

    I am sure you have heard about all the other things you can do for MS, but just in case: the medications aren't really a long term answer. Have a look at or and you'll get a sense of what is possible. I am a medical specialist with MS, and I think it's important that people with MS know all the facts, and not just those surrounding the medications.

    Be well


  2. Julie - congrats on taking control of your medical care! It's really important to ask lots of questions and be proactive about these things. After all, most doctors are not mind readers, and they need to remember that we are the ones paying the bills.

  3. Bravo Girl!! And what size shoe are you btw?? LOL would love to borrow those!!

  4. nah I'll pass on the girly-girl shoes - just give me my big clunky COMFORTABLE ol' Asics trainers...
    Funny, this reminds me of my 10-YR battle w/my "Johns Hopkins" endocrinologist who constantly harped on me for taking [what he considered to be] an excessive dose of Synthroid. I NEED for my T4 levels to be "high normal" & my TSH to be suppressed to be FUNCTIONAL...

  5. Boy do I hear ya! I too need yet another new MS DR., tired of being treated like a germ. I busted her about promoting certain drugs for money and sge just disses me now, same scenario with one before her, both were DIRECTORS OF MS CENTER at their hospitals. UGH. Good thing I'm in a big city. AND You GO girl! GO

  6. Wow! Great for you for standing up for yourself! I refuse to be treated like an ignorant child by any doctor. I may be uneducated on certain point but I expect it to be explained to me respectfully and intelligently. I am currently in the process of switching doctors myself. I have the first meeting on Wednesday. I'm keeping my fingers crossed. He's part of Johns Hopkins so I think I've got a good chance. Even after about 10 years of an MS diagnosis I am just starting to come to grips with it. Part of that process is starting a team to participate in MS Walk:Columbia 2010 and I have started a blog called MS and Me : My Story at . I'd love it if you would take a look at it and if you like it link it on your blog roll and I will do the same for you. Thank you.

  7. It really takes lots of guts to confront your doctor that way, but sometimes this is the way you achieve results. Progressive multifocal leukoencephalopathy symptoms are very similar to MS symptoms and by the time it is detected is too late. That is why so many doctors are against Tysabri treatment, but on the other hand the risk rate is amazingly low and many patients achieved great results with tysabri.
    How are you now, did the new doctor changed your therapy and prescribed Tysabri?