I will continue to kick ass as usual, TYVM. #MSequals

January 27, 2014 at 1:00 PM | Posted in I have MS., What's up? | 1 Comment

I had been considering disease-modifying treatment again, which means a brain MRI was in order. The last one I had done was in late 2011 and my neurologist didn’t want to start a new course of action without a baseline scan. He prefers I get them done annually but (1) EXPENSIVE and (2) I think it’s excessive if there are no changes to symptoms or treatment.

My most recent exacerbation was different than the previous ones and felt more serious. I had numbness and tingling in my face and along the entire right side of my body—that’s never happened before—and it lasted for a couple months. The severity of the numbness and tingling ebbed and flowed but never went away, even if the only thing I consciously noticed sometimes was a post-dental-visit feeling in my tongue and cheek. Logically I knew the severity was comparable to previous exacerbations in which the (lack of) feeling was in my feet, legs, and maybe hands, but emotionally it hit me much harder. “So close to my eyes!” I kept thinking, “I don’t want to go blind.”

Here is the basic progression of my thoughts for each exacerbation I’ve had:
1. This is unsettling.
2. This isn’t terrible. It could be much worse.
3. I wonder what will happen next.
4. I wonder how bad it will get in the future. Maybe I’ll be paralyzed/blind/deaf/etc.
5. I’m lucky to have a husband who will take care of me.
6. This isn’t terrible. It could be much worse.
7. I’m fine.

I knew that once the exacerbation passed I would forget how utterly freaked out I had been when it started. The neurologist mentioned (not for the first time) that there was an oral therapy on the market that I should consider and that, should I be willing to discuss it, a brain MRI would need to be done. So at the end of last year I set up an appointment in January—might as well start working on the new deductible!—before I could change my mind.

I had a brain MRI done with and without contrast at a medical imaging outpatient center a couple weeks ago. As I understand it, the contrast helps make clear the lesions that are active. Then a staff radiologist interprets the images and writes up a report for the neurologist.

After seeing the report from the radiologist, the neurologist called to tell me that I should consider bringing Bill with me to the appointment; since Bill is my partner and caretaker, he thought we should discuss the treatment options together. The report indicated that there were active lesions on my brain, which could be a sign that the disease was progressing. This was, um, a little unsettling. He hadn’t seen the actual MRI, though, because I had it in my possession on a CD.

Last week I went in to see the neurologist. (Bill didn’t go with me because he had field jobs scheduled for work.) We discussed the treatment options. And then we looked at the images of my brain together. And then I asked a bunch of questions and explained my philosophy on treatment. He said it was a very reasonable, scientific way to look at things. (Duh. My brain isn’t broken.) And then I told him that I’m not starting treatment again because, as best we can tell, things aren’t getting any worse right now.

What we saw in the images looked not as bad as the radiologist’s report had seemed to imply. Some active lesions are to be expected since I’m having relapses. My relapses aren’t getting more frequent. My symptoms aren’t getting more serious* even if they were slightly more troubling this last time. The nature of MS is that it may or may not get worse, the medicine may or may not help, and we can’t really know either way. Oh, and the medicine is REALLY expensive. For all of those reasons I told the neurologist that I’d rather spend the thousands of dollars on a family vacation.

*The active lesions are locations of demyelination in my brain and symptoms show up in the the places where that part of my brain sends signals. So the numbness moving from my feet to my face just meant that the lesion was in a different place this time. (That’s as best as I can explain what I understand to be going on.)

Immediately after the appointment I called Bill to let him know all about it. He’s a worrier, that one, and I wanted to relieve him of that burden ASAP. Soon after that I texted a friend who had lent a supportive ear about the whole affair. Her response: “Woo hoo!!!! Suck on it, MS.” I agree.

1 Comment »

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  1. I feel pretty privileged to have seen inside your skull! If anyone can kick MS’s ass, it’s definitely you.

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