How MS came about

In August I had numbness and tingling in my right hand. I thought I had pinched a nerve doing martial arts, so I just rested it. It lasted two weeks.

Then two weeks later (over labor day weekend), the same hand went numb, this time to my elbow, and my right lower leg went numb and tingling. I saw Dr. Carter, my Osteopath, who was treating a knee injury and she told me to keep resting and see what happens. She tried to get an MRI of my knee and it didn’t pan out with insurance.

Sunday, September 29th, 2013, I woke up with the whole right side of my body numb and tingling… Knowing something was going on, I called my primary care doc, Karoline (not the Osteopath). She called me Monday night (at 8:45 PM!) to talk about it. She said it could be a pinched nerve and I could go on steroids to reduce the swelling. I’d go in Tuesday morning and see her. When I woke up, I was seeing double. Not good. She said that this is looking more like MS and not a pinched nerve. She ordered a brain MRI. After waiting the rest of the (stinking) week, I got the OK from the insurance to make an appointment. So Friday, I made an appointment to have the test done on the following Wednesday morning.

Wednesday October 9, I went to have an MRI done. I got the results on Wednesday the following week (ugh!). My doc called said she wanted me to come in and talk. She’s known me for 15 years and I don’t need it softened, just give it to me straight. So she told me that it looked like MS and she wanted me to come in the next morning to discuss the MRI report. I went off to have a fun field trip with Lincoln at the Pumpkin Patch. It helped keep me from breaking down, that’s for sure. On the way home, it hit.

Thursday, I met with Karoline, my doctor, and she gave me the name of the Neurology clinic to go to. She said in her practice, she’s diagnosed MS 3 times; that it’s not that common. I beg to differ after several friends on FB reached out saying they had it. Say what? She made the appointment for me while we were in her office. We then said goodbye and I’d see her in a couple months, at my regular check up.

Wednesday, October 23, I met with Dr. Egan at Oregon Neurology. He was nice, even keeled, even had a sense of humor. He agreed that I did have MS, didn’t need to have any additional tests done (whew), and we’d start looking at meds. So I started looking at the two that he gave me information on.

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. After pondering this,  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 and they are starting the pre-auth on the meds.

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.


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