On a daily basis, I don’t think much about MS. I mean, I know it is there, but 14 (+) years in, the symptoms are generally manageable but more of a nuisance than anything else. I don’t feel sick because I have been adjusting to my new normals for so long. Usually those norms become a part of who I am: neuropathic, off-balance (read: clumsy), unable to sleep, and tremor-y, just to name a few.
But last week the vertigo hit me from out of nowhere and I spent four days crawling around my house. I needed to take care of things on the homefront, and crawling was a better option for me since I was closer to the ground which meant a shorter distance to fall.
Normally I wouldn’t even think about calling my neurologist because I always think these things are just par for the course living life with MS. And even though I know the rule of thumb is generally that your neuro should be informed of any “new” symptom that lasts more than 24 hours, I seldom listen (insert judgements and “shame on yous” here). I asked my MS sisters if they thought I should call, and they responding with a resounding “DUH”! Ok so they didn’t say duh but they did tell me what I needed to hear.
I saw my doctor emergently just one day later. I have a great relationship with him and have been seeing him almost as long as I have been diagnosed. It will be 14 years in November. So usually my bouts with vertigo have been “positional” which basically means it only happens when I am sitting, standing, or laying down in certain positions. This is NOT MS. But when the vertigo is constantly present, then for sure it involves activity on the brain stem. It also causes utter nausea, and I have been walking around with what feels like vomit at the top of my throat ever since this started. Once we established that MS was indeed the culprit, he looked at me, as serious as I have ever seen him, and said, “Rennie. We need to talk.” I knew what was coming yet held out hope that magically he would have a brilliant solution for me.
What he told me was the following: “Gilenya (the disease modifying therapy (DMT) that I have been taking since clinical trial ) is clearly no longer working for you.” I have seen writing on the wall for a long time now, but I still felt like I had been punched in the gut as the color, I’m sure, drained from my face. I know my situation. I have failed on every single DMT out there. Except two. I am precluded from taking the one I had been waiting for as it progressed through clinical trials, due to my recent battle with breast cancer. That leaves just one more option: the one I have called “the big gun” since before it even came to market in November of 2014.
While Lemtrada (Alemtuzumab) promises great results, it is not without risks. Scary ones. There are pre-medications and post-medications, not to mention monthly blood work for at least 6 years after the first infusion. In simple terms, Lemtrada is an antibody that works by depleting certain white blood cells, partially responsible for immunity. Since MS is thought to be an autoimmune disease where the body mistakenly attacks the brain and central nervous system, the theory is that depleting the culprits allows the body to repopulate with healthy cells that have no memory of their previous programming, thus potentially reducing (or even stopping) MS activity.This means that I will be even more vulnerable to secondary infections and illnesses while my immune system works to re-build itself. The thought of wearing a protective mask and explaining to my two year-old nephew why I can’t hug and love on him the way he’s accustomed to breaks my heart. Plus, if it doesn’t work, there are no more options out there for me, and they still haven’t done research on which, if any existing treatments, would even be safe after taking Lemtrada. That, for me, is the scariest part.
But if there is one thing I have learned from MS, it’s that I can’t be scared for the future. I need to focus on the present. For me, there is no decision to be made because even though I complement my traditional treatment with alternative ones, not being on treatment is simply not an option for me.
As I have done for the past 14 (+) years, I will do what I always do: Pick myself up, put on my big girl panties, and do what I need to do to in order live my best, most productive, and happiest life. After all, isn’t that what everyone aspires to? Plus, I still have plenty of fight left in me, and I am far from done!