My fingers seem to be tingling.
I live in San Francisco with my husband, two kids and dog. As I sit to write this, I’m reflecting on the past three weeks of our shelter-in-place and social distancing guidelines as mandated by our public officials, Mayor London Breed and Gov. Gavin Newsom because of COVID-19.
I was diagnosed with MS in 2015. Normally, I spend my days managing my family. Waking up, getting the kids fed and to school on time. A win every time that is accomplished because all parents know getting up and out of the house can be challenging. I exercise (something that is very important to me because of my MS) and then spend the rest of my day running errands (Target, grocery shopping, getting snacks and dinner ready, etc.), attending meetings for my volunteer projects, walking the dog, being a landlord and trying to spend time with my 93-year-old grandma...
When I was first diagnosed, I remember sitting in my neurologist’s office at the time in Vermont, which was quite far from home. My motto is “laugh or cry” over tough situations, and I wanted to be an easy patient for the staff. I turned to my parents after the official MS diagnosis and smiled and said, “At least it’s not diabetes! I could never imagine injecting medication. As long as that never happens, I’ll make it through this.” I swear, my neurologist turned pale white.
That was the beginning of my two-and-a-half year journey with Copaxone (which ended abruptly when I formed new lesions back in 2016)...
As I sit alone in my house, I am becoming familiar with the sounds it makes I never noticed before. The ticking of the clock is soothing, the dropping of ice in the freezer startles me and the subtle noise of the furnace turning on calms me. I am not usually alone with only the noise of my home. You see, my home is usually full of life. I normally cannot hear the sounds of my home over the sounds of my two boys and their friends. I must admit that I miss the sounds of the water running forever in a way too long shower, the microwave heating up a second and third dinner, and the monotonous commotion of endless video games.
I reflect on many things during my time in quarantine. Why did I get MS? Why do I have to get treatment once a month? Why am I always tired? Why does my hand go numb? Why can I not walk a mile without foot drop?
March is multiple sclerosis awareness month. Well, on the calendar it is.
But this past March, the world has been occupied with COVID-19. So, naturally and rightly so, our attention and efforts have shifted to keeping ourselves, our families, our communities and the world safe. Life has gotten insurmountably scarier for those of us who are medically compromised, and I imagine it's intimidating for many others as well. I won't attempt to compare COVID-19 and multiple sclerosis. However, the same empathy, compassion and support we desire for the MS community should be extended to people and families impacted by COVID-19. While we continue to support each other, I'm confident that our amazing medical professionals and government will get a handle on this crisis and life will prevail...
You’ve just been diagnosed with MS. You’ve heard about the disease (“OMG, I’m going to be in a wheelchair”). You’ve heard something about the medications that are now available for MS, but know little about them. You’ve seen other people with MS, but how does their course relate to yours? What can you do to prevent disability?
These and many other questions crowd in on you, and it all seems overwhelming. You need to spend more time with your neurologist or nurse specialist, but don’t know where to start. Hopefully the following questions to ask will be a guide for you...
People with multiple sclerosis are the reason the National MS Society is here, and we know this time of uncertainty can be unsettling. We are working closely with our partners around the globe to bring you the latest, most accurate information possible to keep you and your families safe as we move through the COVID-19 pandemic together.
Here are some of the recent questions asked on our Ask an Expert call...
I had the first MS symptom in 2007 while I was in college and just finished my last class. Suddenly, there was severe tingling and numbness in my whole left upper limb. I thought it could be a result of strenuous day. Everyone left the classroom, and I was trying to release my hand. But it was not releasing. Two of my friends came back after noticing me not coming. We went to the hospital.
In the emergency ward, basic tests were done. I could sense that my heart was beating very fast. It was about 6 p.m.. The senior doctor arrived and checked me. He suggested an immediate X-ray and the results came back normal. So, he referred me to orthopaedic doctor. The next day, the orthopaedic doctor suggested I get an MRI of my cervical spine. He suspected I had thoracic outlet syndrome. But when my reports came normal, I went on to hear more suspected illnesses that could be causing my odd symptoms: nerve impingement, peroneal nerve injury or palsy. My tingling and numbness subsided before any nerve conduction tests were done, and my other symptoms like blurred vision, just went away.
Sometimes it can be difficult to live with those pesky MS symptoms that get in the way of the things you actually want to do. It makes it harder that no one else can see or understand the illness too, right?
The thing that makes symptoms even harder to deal with is when a loved one or a friend starts to put their ailments onto you. You know what I’m talking about. When someone tells you they are also exhausted, they also “didn’t sleep well” and they also “have terrible back pain.” Am I right in saying your first thought is, “well it’s not as bad as mine?”...
Managing MS is challenging, given its unpredictable nature. Managing MS in times of stress – such as we are all experiencing now with the COVID-19 pandemic – can make it even more challenging.
Here are a few tips and resources that may help you and your family manage through this very difficult time...