Although I allude to my MS in a number of blog posts, I usually don’t fill folks in on all that is going on with this MS that I have been blessed with. Because things are changing so often in my little corner of the MS world, I thought I’d just update everyone and then I wouldn’t have to repeat the story time and time again – until the next time.
Thus far, I have been on three MS therapies/protocols (medications), and have failed all three in less than three years since diagnosis. Or as someone so nicely put it – the therapies have failed me! What this means is that none of them were able to hold off new lesions forming in my brain and none of them were able to stop, or at least lesson the MS side effects associated with the disease. In fact, at least one of the therapies I was on made everything much worse.
About six weeks ago, my neurologist took me off of the latest therapy as the side effects were atrocious. Then she ordered an MRI – which showed I have two new lesions in my brain (one 6 mm and one 8 mm) as well as increasing white matter in the area of the brain that affects balance and dizziness. If any of you that have been reading my blog since December 2010, you may remember that it was the loss of balance and dizziness that sent me to the emergency room in the first place. There is nothing to medicate those two symptoms away and I continue to live with them daily.
About a month ago, I endured my first MS relapse. It lasted about a week and was so painful, I didn’t know what to do. And since this was my first experience with a relapse, we didn’t do anything except increase my pain medications. By Thursday of that week, I couldn’t take the pain anymore (and it was an all-over pain, not just in one place) – I made my husband call the neurologist’s office to try to find out what was going on. The nurse all but demanded I come in and see the neuro’s PA the next day. We did and that’s when she told us it was a relapse…so, now I know what a relapse feels like and how it affects me. Good info to have, though we still believe the doctor should have been more forthcoming throughout about what commonly happens during a relapse. We know there are no two cases of MS the same, but there are general things that occur during relapses that I think we should have been educated about. It sure would have made me go to the doctor’s office much quicker than enduring that kind of pain for a week.
The next week, the PA ordered a Solu-Medrol infusion – which is three days of high-powered steroids administered via an IV port:
The purpose of this is to reduce the swelling in the brain, caused by the relapse, as well as to reduce the swelling in all the other joints in my body that were the ones causing me to be in so much pain. It did its job well and I was much better after the infusion.
At my next neurologist’s appointment, my doctor decided that since nothing has helped so far, she wanted to call out the big guns – Tysabri. This is a once-a-month infusion that has to be administered in an infusion center with trained nursing staff at-the-ready in case my body couldn’t tolerate the medication. It is also the strongest MS drug on the market and it is carefully controlled by the drug’s manufacturer. The short-term side effects can be minimal but the long-term side effects can be life-threatening. I had my first infusion of this medication a week ago and have not noticed any difference in my MS, though I have noted that I have no energy, either. According to some folks who have or are taking it, it has been a great drug for them and they’ve felt like Wonder Woman while on it. Unfortunately, I have not had that experience yet. We will have one more infusion before I see my neurologist again so we’ll see if this lethargy continues or if anything else (good or bad) happens. An MS patient cannot take this drug for more than two-years…but, I honestly do NOT want to be on it more than a few months. My husband hit the nail on the head while dealing with this drug choice by saying, “We have three children at home and one in college who needs their mom. In two years, we will still have three children at home and one in college who needs their mom.” Certainly NOT willing to lose sight of the fact that I am a wife and Mom above all else.
We’re basically in another holding pattern – to see whether this ‘last chance’ drug works or not. And if it works, how long are we willing to play with my health? And if it works, where do we go from there since it’s the most powerful drug for MS available?
So many questions, so few answers.
