MRI, Barrows, and New Treatment Plan

I'm honestly not sure how to write an update. Its not that the news is terrible, or overly complicated....I think I'm just ready to be done with the whole thing, and it's definitely not over yet. I had an MRI this past Monday, and met with my Barrow's neurologist today. I finished plasmapheresis just over two weeks ago, and we were hoping the treatment would deactivate the lesion; that it would no longer "enhance" on the contrast views of my MRI. The purpose of the meeting today was to review the new MRI, talk more about Tumefactive MS, and talk about our plan for ongoing treatment.

Surprisingly, I was as nervous as ever going into this appointment. Fortunately, my doctor explained everything in detail, and made sure I left with all my questions answered, and a solid plan in place.

In a nutshell, here is the update:

MRI
The news on the MRI is good, bad, and uncertain. The good news is that my lesion hasn't grown in the past two weeks, which is one thing we were hoping for. And it means I'm in the clear for right now. The bad news is that the plasmapheresis hasn't changed the lesion at all, and the enhancement pattern is almost identical to what we saw before the treatment. Dr. Okuda said he would have expected to see a change there, and he's not sure why neither the steroids nor plasmapheresis have been able to deactivate this lesion. He did say that it's still a good thing we did the plasmapheresis because it protects my brain tissue, and is possibly the reason the lesion hasn't grown. He is still confident that this is Tumefactive MS (TMS), but says that he is going to be extremely proactive about making sure he isn't wrong. He said, "I can't afford to be wrong, because if I'm wrong, and it turns out to be a tumor, your mom will kill me!" Haha. We are going to repeat the MRI in a month, and if the lesion has grown at all, Dr. O says that I will be "getting a new haircut." Aka...a biopsy would be back on the table. Uggh. Considering that this thing grew several millimeters in the two months before my plasmapheresis, I'm not feeling overly confident that it will stop growing. I'm hopeful, but not confident. I'm so tired of the uncertainty. If I had a jerk doctor, I think I'd honestly give up at this point. Dr. O is helping me stay positive and proactive, and keeps me laughing, even when we are talking about serious stuff. He gave me a big hug when I left, and I know he really cares about me and that he's spent alot of time thinking about my case. For me right now, that is making the difference between impossible and bearable.

Treatment Plan
The MS drug we chose is a once monthly IV infusion called Tysabri. (When it comes to MS drugs, there are several choices.) Originally, we were planning to go with Avonex or Copaxone, but since the plasmapheresis didn't do what we hoped, my doctor thinks it's important to to try something stronger, with a better chance of protecting my brain tissue. Tysabri has some dangerous side effects, but the worst of these, PML (Progressive multifocal leukoencephalopath), rarely happens in the first year, so we are planning to use it for a year and then switch to something else. Dr. O is confident this is the best treatment for me right now. I also have another med that is supposed to help with fatigue, which is probably my most difficult symptom these days. I'm hoping it helps! We will also continue with frequent MRIs until we are certain that the lesion is under control.


I don't know why this has all hit me today. Maybe because I've started trying to get back to my normal life and routines, and suddenly my "real" life and my medical life are colliding. For the past several months, I've been living in some sort of alternate world, and I think I thought I'd wake up from it one day and return to normal life. Now that I feel like I've returned to the real world, I guess I'm pretty frustrated that the medical world has followed me.

Despite all the chaos and frustration, I am constantly reminded that God knows me personally, and that he is watching out for me. I truly believe that God is our Father, that he knows us, and that he loves us not just as a group of people, but individually, even with all our flaws and weaknesses. I am forever grateful to know that, and know he will help me get through whatever may come down the road.