MRIs are a crucial and taxing part of having MS – as the patient, it is our right to be able to obtain and view our scans once they are complete. But what if viewing them ourselves is not entirely the best idea?
I had a scan done in July 2019 – I received my results from my neurologist over the phone; they weren’t pretty. I was curious to know more and to understand better why things were progressing and when this all began to occur. What I got was a document to turn into the hospital to obtain July’s scan, but that was it. I had nothing to compare it to, but at least I had a jumping point...
Have you ever seen social media accounts of people who are super-busy, who seem to be moving, networking and taking pics of every glorious moment of every day? As I scroll through Instagram, Facebook and Twitter, I often wonder when our culture decided that being perpetually on-the-go and always clutching a long to-do list are quintessentially American values.
It doesn’t seem to matter what form this flurry of activity takes. It can be anything from a gym workout, a 20-mile bike ride on a lovely trail, a hiking or kayaking excursion amid vivid scenery, images taken from the stands at a children’s event or game, attending a Pinterest-perfect party, or visiting the new, artisanal, farm-to-table restaurant during its opening week. The pressure is on to keep yourself busy, busy, busy...
You’ve been diagnosed with MS and started on a disease-modifying therapy. At a follow-up visit, your neurologist asks that you do another series of central nervous system MRIs. You ask, “Why? Is it really necessary? What would you do if there were new lesions?” These questions are excellent and reasonable. The answers however, are not straightforward.
There is no cure for MS at this time. That said, starting a disease-modifying therapy is most important. Responses to disease-modifying therapies vary greatly. In some individuals, the response is excellent, with no evidence of recurring disease. In others, new lesions and even attacks may occur despite treatment. Not every new lesion is associated with an attack, and new lesions can gradually accumulate silently with no immediate change in course. However, increasing tissue damage may result in increasing disability over time. Thus, monitoring your central nervous system with MRIs after starting a disease-modifying therapy is essential to determine your response to treatment...
“I can’t do that I have MS”
“I would never manage it”
“I’d love to do it but I just couldn’t”
“I’m too tired to exercise”
This is what I used to say to myself for at least 5 years after my diagnosis...
To start this year off right, I thought I’d work on my attitude. I’m generally a “tomorrow will be better” kind of person, but lately, I’ve been feeling that tomorrow is going to suck, too. Every day I wake up and I expect things to be better, but they’re not.
I used to face each day as if anything was possible. I viewed MS more as a nuisance than the insidious disease it can be. But almost 18 years later, my positive attitude has dimmed. I find it harder to find the bright side of things. Little by little, symptom by symptom, I feel pieces of me chipping away...
It’s that time of year again: The time when lists of people’s proud accomplishments scroll past on your social media feed. I don’t mind it. This year, in fact, I considered joining in to mention my book deal, which still feels surreal all these months later.
But every time I thought about posting, I remembered this time last year when I was ending the year without reaching my writing goals – and with a disease that had recently progressed. I was adjusting to new multiple sclerosis medication, slammed with side effects and fatigue, and scared for the future...
It first started with a limp while carrying my one-year-old daughter on a hike to Calf Creek Falls in southern Utah in 2000. After years of searching for an answer as to why my walking and fatigue were getting steadily worse, in 2015, I received a diagnosis of primary progressive multiple sclerosis (PPMS). Wow, finally I had an answer. Today, I am no longer able to walk on my own, and I utilize a wheelchair much of the time.
My progression is most likely very familiar to many with PPMS. It started with that limp, then went on to needing one cane, then two canes, then a walker, then a rollator, and finally, the wheelchair. Ah, the wheelchair. That’s what I most want to talk about. For years I resisted it even as my ability to enjoy the things I love to do and people I like to see faded into a past life. My wife would say, “Steve, use a wheelchair if you need to. It would make things so much easier.” But pride got in the way. Finally, I gave in. And what a difference it has made...
Dizziness is the bane of my existence. It’s my most persistent and irritating MS symptom. It’s led to a long list of restricted activities: amusement park rides, drinking caffeine or alcohol, cartwheels, reading on a road trip, certain yoga positions.
Obviously, none of these activities are essential. But even with strict adherence to my self-imposed “dizziness avoidance rules,” I still have those days when I can’t escape that woozy, cloudy feeling that I call “dizziness” (because nothing else describes it quite as well)...
“Do I really have to have another brain MRI? It’s really very expensive, and I don’t know if it’s safe?”
These are totally understandable concerns. Being placed into a narrow, noisy tube for what seems like forever is certainly unpleasant. However, understanding the role of central nervous system MRIs in diagnosing and managing the treatment of MS may make the experience somewhat more tolerable.
My rollator walker is my freedom. There’s no question about that. It allows me to observe the world while I’m walking instead of constantly looking down to avoid pebbles or cracks that might (and do) send me reeling.
Liberating as it is, the rollator has its drawbacks. It’s big and bulky, and it’s forever a challenge to figure out where to stow the dang thing when I’m at a concert or in a restaurant. And when I’m walking down the sidewalk, I’m often either parting crowds or zig-zagging to get out of people’s way...
Yes, you can have multiple sclerosis. And something else.
Just two years after being diagnosed with MS, 47-year-old Lisa Emrich, a professional musician in Falls Church, Virginia, suddenly was unable to play the piano...