This is only the second time I am posting specifically about my illness. When I was diagnosed with Multiple Sclerosis, I was so afraid that it would be how people defined me: 'Oh that girl with MS.' 'Did you know Emily has MS?' But I feel like the events of this last year regarding my health are too important to not share...
I find it interesting that when I am finally public about my challenges with this disease on social media a year ago, I then proceed to have one of the hardest years in the last decade. I had been blessed for so long with good health that I'm pretty sure I took it for granted. I may have even been a little arrogant about it.
I started losing my energy after Boy was born. He, as I have mentioned so many times, was a very challenging baby. I just believed that my unbelievable fatigue was because not only was he not easy to raise, but I had two kids now and a husband who was gone for work a lot.
It was after Boy was born that I also decided to go off of the injections I had been taking for so long. They presented another host of challenges. I wasn't comfortable with the other options on the market, so that's when I started an experimental treatment. Just because it may have worked for a large majority of those taking it, it didn't necessarily work for me.
I had my annual MRI done in January of 2014. (I should have known something would be off--it was #13.) The scan showed an extensive amount of new lesions. MS, in case you don't know, is scarring in the central nervous system when a person's own immune system dymyelinates the protective sheath that surround the neurons. When this happens, these scars flare bright white when a contrast dye is injected into the blood during an MRI. Let's just say that my brain looked like a fireworks show.
I was so upset. I hadn't had to deal with this for years and I didn't really want to deal with it now! I convinced my then-neuro PA that we should just repeat the scan in 6 months. After all, I had just been through some of the hardest 18 months of my life. Stress is known to have a negative effect on people in my condition.
At around this time I received a tip that the company my neurologist worked for was going to be closing after some sort of scandal. To this day I think they are still open, but it was enough for me to jump ship. I had been so unhappy there for so long that, looking back, I'm surprised I stayed around as long as I did. S has a coworker with MS and she highly recommended the clinic she went to. So I called and made an appointment and officially had all of my records transferred.
The physician I see now is really, really nice but, upon reviewing my prior MRI, he proceeded to give me an 'are you crazy?' lecture. He basically told me that patients in my condition, without intervention, will not be walking in 10 years. I told him my concern with the drugs. He provided reassurance and convinced me to start the testing process for an IV drug called Tysabri.
Now one of my biggest complaints about having MS isn't the disease itself, but the fact that every single time I start a new therapy, there is something wrong with me that makes the drug not a great match for me. With interferon drugs, I felt like I had the flu all of the time. With Copaxone I felt fine, but had horrible injection site reactions (I have not a lot of subcutaneous tissue which is mandatory for this drug.) So I shouldn't have been surprised when I ended up testing positive for a virus when, in conjunction with Tysabri, puts me at a great risk to develop a fatal brain infection. In fact, not only did I test positive, I tested high positive. And not only that, my risk was even higher because I'm considered low-weight.
Great.
My doctor and PA assured me that this was still my best option and the agreement was that I would only continue with this therapy for a year. The titer levels wouldn't be high enough to put me at real risk and, as soon as I stop, the levels go down. In other words, this drug doesn't have a memory. In other words, it looks like I'll be taking medical vacations every other year for the rest of my life. That is, unless something better comes out or, even better, a cure is found!
I started the treatment late June and within a week became sicker than I have been in a really, really long time. What started out as a simple cold spread like crazy and put me at risk for pneumonia. I was like, 'what the heck?' Tysabri lowers my immune system and I was suddenly looking at a long road of constant illness. There was no way I wanted that! In the weeks that followed I also started losing a lot of weight for no apparent reason. I'm still not sure why it happened, but I can tell you one thing: gaining a lot of weight isn't ideal, but losing a lot of weight isn't ideal either. I felt awful. After several rounds of antibiotics I finally got my strength back. And luckily, that was the only time I have been really, really sick. So far I have remained relatively healthy. I even survived a round of a GI virus that hit our home a few weeks ago.
8 treatments later and, call me weird, I absolutely look forward to my infusion days. It is so quiet and relaxing. It's kind of nice to have people take care of me. And the best part, of course, is that I feel fantastic. I didn't know until recently how bad I was doing last May when I had my first appointment at the new clinic. I failed all of my tests miserably. I never fail. It was depressing. I remember feeling so dizzy and tired all of the time. And now it's all gone! Though the risks are there, I am so grateful that this medicine has worked so well for me. I am grateful that, through financial assistance provided by the manufacturer, I don't have to pay a dime for it! (No one does--I still don't know how they can afford to do this, but it is a blessing for a lot of people who are used to paying a lot in medical expenses each year.)
So I'm moving forward in 2015 feeling more like my old self--and so quickly. It may not be an absolute cure, but I think Tysabri is pretty close. And I am SO grateful that I moved to the clinic I did. The whole year was a change for the better!
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