Today I met with my Neurologist, Dr. Egan, to go over my MS diagnosis. I was able to see my MRI images, which were kind of cool, in a sick and twisted sort of way. 🙂 So here are the pictures of the images that were on the screen, hence why they look bad. But you can see a bunch of white spots, nothing that was glowing, showing an active lesion. But I am in remission right now so that explains it.
I have been officially diagnosed with relapsing-remitting Multiple Sclerosis (RRMS)- the most common disease course — is characterized by clearly defined attacks of worsening neurologic function. These attacks — which are called relapses, flare-ups, or exacerbations — are followed by partial or complete recovery periods (remissions), during which symptoms improve and there is no apparent worsening or progression of disease. Approximately 85% of people with MS are initially diagnosed with relapsing-remitting MS. Source
I was given a choice of two different drugs to go on, and I am now in the middle of trying to figure out if insurance will cover it, or if I want to take the side effects. Tysabri Which is given once a month via IV infusion; and Gilenya which is a single pill a day. Both have theirs pros and cons, and mainly it’s Tysabri which is going to be 1. expensive, even with insurance, and 2. it has a bad potential side effect if you have a virus inside of you… Not something I want. So I am leaning towards the Gilenya, which will be easier to take, and cheaper. The first time I take it, I’d be at the hospital in a cardiac room, have to have an ECG before I take the pill and then 6 hrs after, to make sure my heart rate is okay-it can slow down the heart rate.
Both of these are better at preventing relapses, 62% and 50% respectively, versus the injectables that are 32%. So there are things to think about. I am able to keep exercising, dieting, hot tubbing (thank goodness-I had read that it can cause relapses, but it’s only temporary), living my life as I normally would. When I have a relapse I just need to take care of me, understand it’s okay to be tired and sleepy. I will be emotional, have a foggy head sometimes, and know that it is okay and it’s the new normal. 🙂 I can do it!
EDIT TO ADD: I called Dr. Egan’s office and picked the oral medication to start with. After reading all the stuff they gave me yesterday, this seems like the lowest risk. I am going to have my vitamin D levels checked today (Thurs, 10.24) and they are starting the pre-auth on the meds. Maybe by next week I’ll have something. 🙂 Then I forgot to add that I’ll have a follow up MRI at the end of December (to avoid paying the bill), to see if the lesions are staying the same, etc. Then depending on that scan, I’ll have another at 6 or 12 months. I think that’s all I forgot to put in here. Ugh. My brain is mush-this is learning overload. 😉
So this week I have been hitting the gym like I had planned. I am stoked at how it’s making me feel! I feel stronger! On Friday I move onto the 3rd session of workout A. So now I’ll be upping the weight a bit more, since I am cutting down on reps (slowly, from 15 to 12 for 2 sessions). Friday is Squats, Push Ups, Seated Rows, Step ups and Prone Jack Knife on the ball. Sounds fun, right?! Then 45 minutes of cardio of some sort (elliptical). Then I am off to the beach to record a CD! Looking forward to Friday night at 6 when I get to sing with 275 other people! Hopefully all the work outs will be paying off this week, but after 5.2 lbs last week, we’ll see what happens.