Damn, My Long Relapse-Free Streak Has Ended
My journey with MS has had some significant ups and downs. Some of the downs include blindness, complete loss of use of two fingers on my left hand (which is devastating to a classically-trained pianist and teacher), weak arms and legs, all over numbness, impaired balance, fatigue, spasticity, anxiety, and depression.
I’ve been enjoying more of the ups in recent years; really since I switched medication to rituximab (a monoclonal antibody therapy used for RA, lymphoma, and other autoimmune diseases, which should be released in a new form and approved for MS sometime in the next year as ocrelizumab).
After switching medications from Copaxone to Rituxan I began to experience actual improvement in symptoms over time. Functions got better and relapses more infrequent. In fact, I hadn’t had a serious relapse that prompted me to call the neurology office in between routine visits in 50 months. Minor bumps, sure, but nothing big.
FIFTY MONTHS!! How cool is that?
But during December and January, I’ve not been well. I developed some sort of infection that caused high fever and chills for several days. Of course I expected that my MS symptoms would flare up which they did a bit. Then after Christmas I caught a nasty cold that took about a month to clear. Of course I didn’t feel great. And, I made two trips to conferences in January which was quite exhausting.
So when I showed up at my regularly scheduled neurology appointment on Monday morning this week, I reported the minor things that had been going on. I admitted to feeling run down and that my “early warning system of a possible impending relapse” which includes facial and arm numbness was beginning to emerge.
Over the weekend, I even began to noticeably lose strength in my left hand and arm. Typing accuracy was taking a hit and playing the piano was becoming more exhausting and frustrating due to reduced touch and control. And, the spasticity in my legs was becoming more prominent again, but I chalked it up to less exercise due to sickness and travel.
What I hadn’t noticed was the entire body numbness; seriously, all four limbs and into my torso. Significantly reduced arm and grip strength. Slightly impaired gait due to some leg weakness, causing a curious little “hitch” in my tippy-toe walk.
Official verdict: mild relapse. Course of action: 3-day round of Solumedrol infusions. The dreaded high-dose steroids which I’ve discussed previously.
During my first few years of MS, I had so many rounds of steroids that the routine became old hat. I knew what to expect and almost had it down to a science. Boy, how easy it is to forget.
Days one and two this week went smoothly. No real problems. I made sure that I drank lots of water, avoided salty and sweet foods (as much as I could), picked up lots of fruit for snacking, and took advantage of a sleeping pill at night to get some much needed rest.
Day three was still okay, but the water retention began to take it’s toll. It’s strange how you can feel thirsty and not thirsty at the same time when you’re body has so much extra fluid on it, but you really need to drink a lot more so that your kidneys can get rid of the excess fluid. Flush that stuff out of your system as quickly as possible.
Fortunately since I’ve only had the 3-day course of steroids, I didn’t need to continue with an oral taper. Yippee. That means that I should be feeling much more like myself by the time I go out of town again next week. But today (day four and no steroids), the weepy eyes, emotional sensitivity, and mental fog have settled in.
I’m hoping that sharing my story while I’m in the middle of it might help the fog to lift. And, I’ve got to resist the urge to watch any more videos on Facebook which promise to be inspirational. It doesn’t take much to get the waterworks flowing again.
Fortunately, I’ve got a great support system at home. Last night my husband was being so sweet and kind to me. I felt horrible when I wanted to snap at him to stop being so nice, but I was fine and would be back to normal soon. How crazy is that? Negative feelings jumping out just because someone is being nice.
I will be glad to be back to normal soon and just have to remember to be extra understanding and patient with my own fragile state of mental, emotional, and physical health at the moment.
I still need to connect with the physical therapist to arrange a month of therapy, but that should be a positive experience. The last time I did PT (almost 8 years ago for MS), I got so much more out of it than just some gait and balance training. Fitting in the appointments will just be a challenge.
In the meantime, I have to start over in counting how many months since my last relapse. That kinda sucks, but at least it is a small reminder that I am still relapsing-remitting and that I’ve been doing tremendously well in recent years.
I’ve been blessed and am truly thankful for my good fortune. This experience is also helping to renew my understanding and empathy for the many of us living with MS who face relapses, steroids, physical limitations, and the renewal of fear for what may happen in the future if things do not get better (or at least closer to “normal”).
If you are experiencing a flare-up or the unexpected ups and downs of MS, please know that you are not alone. We are all in this together.
Were you misdiagnosed with something else before receiving a MS diagnosis?