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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.

Lisa Emrich | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • muse77
    3 years ago

    Boy, do I ever empathize with your situation. I’ve been going through so much stress, outside of the MS, that that stress caused my MS to just take over. I can’t seem to shake it, despite a Medrol Dosepak. I’m very sad, very emotional, extremely lonely, and though I won a national award for a women’s organization and am supposed to go to DC in June to receive the award, I have to pay for it all. And my bank account was broken into on March 24th, which not only messed up my accounts set up for auto-bill-pay, it also threw my Social Security income right out the window. So no payment this month for bills. Other women in this organization actually emailed me, accusing me of running a scam to collect funds! I WAS OUTRAGED. Then when I told them what hypocrites they are, I WAS DEPRESSED, weeping, incredibly sad, but even with a sleeping pill, I can’t sleep. I’m 63, have no children, an ex-husband who tried to cold cock me in the face back in October for no reason (restraining order against him, another door shut), my brother and sister in NC have disowned me when I’m the oldest and the only one who went to college and have a Master’s Degree summa cum laude. But NO HUMAN CONNECTION. It won’t be but another year or so that I’ll lose my home and be on the streets somewhere. There isn’t a thing I can do about it, especially as this relapse has me so numb and dizzy that I can barely maneuver my hands, legs, even my face. God, MS is truly a MonSter.

  • Erin Rush moderator
    3 years ago

    Avery4048, I am truly sorry to read about your rough time (to put it mildly). Sometimes, there just aren’t words that can make things better. You do have the community here that can relate to you. If you haven’t already, you can definitely share and post comments on our facebook page — https://www.facebook.com/MultipleSclerosisDotNet/?fref=ts. We are glad to offer online support and community, especially when real life support is lacking. If you haven’t read it already, you might find this article from one of our contributors quite relatable -https://multiplesclerosis.net/living-with-ms/seeking-support-when-you-dont-receive-it-from-home/comment-page-1/#comments. I hope you are able to go to D.C. to receive your award. Please keep us posted on how you are doing, if you feel comfortable doing so. Thank you for taking the time to share here. We are glad to have you as a part of this community. Wishing you a good afternoon, Erin, MultipleSclerosis.net Team Member.

  • PS98107
    3 years ago

    Hi Lisa,

    we have similar stories in that we are both musicians with MS. Proper nutrition was huge for my symptoms and not giving up was even more so. I have never medicated for MS since my diagnosis in 2002. Please see my story below. Best of good fortune to you. – Phil

    I’ve been a musician most of my life. In late October 2002, before a company Halloween party I was to perform at, I experienced sudden numbness on my left side and muscular weakness in my left arm and hand. I missed the party. My
    wife and I spent that night in the hospital where I was tested for circulatory and neurological conditions. The diagnosis was MS. I shrugged it off at first. I ended up getting three opinions before I accepted it. I could no longer play guitar, drums or keyboards. I couldn’t even do simple things like putting on my own socks or trimming my fingernails. As distressing as this was, I knew giving up my music was not an option.

    I thought about my late dad who, as a boy with severe Cerebral Palsy (CP), wanted to play the piano, in spite of the fact his hands were permanently clenched closed. He taught himself to play notes using the first knuckle of each thumb. He kept at it and the “impossible” happened. His hands began to open until he eventually had full use of his fingers. He went on to play the organ all over the south and here in Seattle. (If you do a Google search on CP organist, you will find a video of my dad in his 60s playing a stanza of Beyond The Sunset on his organ.)

    Like my dad, my deep love of music kept me trying to play. After several months of playing dead-sounding chords and notes, a natural process the brain uses to heal itself called neuroplasticity, or brain plasticity, rerouted my neural pathways and my strength and ability eventually returned.

    Thirteen years later, I am helping other neurologically challenged musicians, thanks to Seattle’s MS Center at Swedish Medical Center, and the generous donations of musical equipment by music stores and individuals. It’s a free program called Get Back Your Music, of one-on-one and group “jam sessions” that focus on reconditioning affected areas. By being persistent, patients can invoke neuroplasticity to recover lost skills. Our ultimate goal: to start a band. (If you do a Google search on Get Back Your Music Phil See, you will find a video KING TV News did on the program.)

    To this day, I have never medicated for MS. I’ve treated it with healthy diet and exercise, and of course, not giving up my music. Music transcends physical limits. Whether one plays instruments or listens to them, the brain responds. Neuroplasticity works for everyone.

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