By Lisa Scroggins
Finally, spring is here, and I feel more energized than I have for some time! I suppose it’s a combination of the improved weather, and an improved outlook.
When I saw my neurologist in February, I asked about Lemtrada as well as Ocrevus (which has since been approved by the FDA). My doctor wasn’t very encouraging about either option, and I was frustrated. I talked with my husband about getting a second opinion. I wanted the latest, greatest treatment, and I wanted it now!
I suppose I’m the classic dissatisfied person with long-time MS. Things really went south for me a few years ago, and I won’t lie: I was deeply sad, and shaken by the newest losses I was experiencing. We have made trips to see a specialist, and had high hopes for something new that might help me improve. I’m sorry to report that not only did the specialist not have any new ideas or ones that differed from my general neurologist, but she turned out to be a truly unkind person. By that I mean that from the first moment I met her, her basic social skills were sorely lacking, to the point of rudeness. (Example: when I first met her, I held my hand out to shake hers, and began to introduce myself. She held her hands up, palms facing me, saying, “I just washed my hands!” My gut told me this was weird, but I fought my instincts. I didn’t know this doctor yet, and we’d traveled quite a distance, incurring hotels, meals, gas, etc., and the last thing I wanted to do was go back home without getting seen.) That kind of thing can happen to anyone, but somehow, because MS is a chronic illness, and I made special arrangements to see a so-called expert, I was unprepared for the callous way that the “expert” treated me. It seems obvious in the abstract that not all doctors have a great “bedside manner,” but I confess I was really vulnerable and it hurt, probably more than not being offered something new to try.
Back to my local neurologist and my silent demand that I must be on something new. While I have not officially gotten a second opinion, I feel as though I have. I watched a YouTube presentation by two MS neurologists in another geographical area, and even though the words they used were very similar to what my doctor had said, it essentially was confirmation of what he had told me in February: those two treatments are new, and it remains to be seen if either or both have unanticipated, even serious side effects. I know they didn’t mean it in a disrespectful way, but they as much as said, “let others be the guinea pigs.” Worded more professionally, for people who continue to experience attacks while on another medication, one of these drugs might be a Godsend for them. But if attacks are not occurring, it’s much safer and wiser to remain on one of the drugs with a much longer safety profile.
I did not want to hear this, and yet, I needed to hear this. My husband didn’t say so, but I suspect he is relieved that I’m not pressing to hit the road again in search of a different answer. I’ve come to a proverbial fork in the road of navigating life with a chronic, sometimes cruel illness. The best thing for me to do is to continue on the therapy my doctor has prescribed.
People with MS are taking big risks to try to improve their functioning, and both Lemtrada and Ocrevus have the potential to be quite risky. The biggest buzz seems to be about HSCT (hematopoietic stem cell transplantation). This has not been approved by the FDA, although there are studies in progress. So far, the number of patients is small, and while it looks promising, I realized that I didn’t want to die in an attempt to get the procedure. I know of people who have gone to other countries to get this procedure, and have gone to great lengths to raise the money (in excess of $100,000) to do so. Not only am I unqualified to determine if protocols done anywhere are best practices, I’m also not fluent in any of the languages spoken where some are having HSCT.
Some of these people have died. Some advocates describe that a specific thing happened to this one or that one, and maybe those stories are true. And maybe they aren’t. I really did some soul-searching, and tried to imagine if I pushed to do this. I’m in a foreign country with my husband, when suddenly, I develop a complication. Things don’t improve, and I actually die. Well, then, my husband, having watched everything, has to contact everyone in our family and tell them. He has to get himself (and my body) back home, and deal with everything that happens when someone dies. I’m not trying to be dramatic, but I had to really imagine this. As much as I wish for an improved (maybe even cured!) condition, it seems cruel to put the people I care about most through the wringer. A less dramatic scenario could happen, too, wherein I didn’t noticeably improve, but we’ve spend a massive amount of money, not to mention the emotional capital draining away. And maybe I’d be one of the lucky ones, the folks who swear they’re like new.
Even as I write this, I wonder if I’m giving up too easily. Never stop fighting, right? The truth is that many people with MS profess to be willing to take gargantuan risks to get better. I counted myself among them. I’ve realized that I’m not such a badass, after all.
All of this has served as a kind of “spring cleaning” of my attitude. It’s surprisingly freeing to imagine not questing after another drug! Instead, I’m trying to focus on things that will bring me joy, as well as new “treatments” that I can control. I’m fortunate that we could afford to buy a Freedom Chair, and that allows me to ‘walk’ our neighborhood. I recently signed up for equine therapy and am looking forward to being outside on the back of a horse. Perhaps most telling of all, I found a book that has given me a lot of hope. I know I’ll still follow everything related to MS, I’ll research it and ask my doctor about it. Other people may push hard for something to get better, and maybe that’s fine for them. I’ve decided to focus on the here and now and the known.