The title of this post is the short story. Below, is the long story.
It has been a rough winter. We lost out on another house we were in love with, we’ve had car issues, I found out my foot has been broken for two years and I’ve just been walking on it like no big deal, and I was diagnosed with MS.
Let’s rewind a bit…
In March of 2010 I started having trouble breathing. I felt like I was never getting a full enough breath or getting enough oxygen. The doctors told me it was anxiety, once even prescribed Ativan. I knew it wasn’t, but tried to ignore it as best I could. A week or so later, I started losing feeling in my feet. I assumed it was a pinched nerve or bulging disk and spent a few hundred bucks on massages. They didn’t help, and the numbness and pins and needles feeling spread up my legs and torso, to my arms, and hands. It was so bad, I was unable to type on the keyboard and couldn’t sense temperatures. Again, multiple doctors told me it was anxiety. Finally, in June, I met with one doctor who said “Presenting with these symptoms at your age (27) is textbook Multiple Sclerosis.” He immediately sent me for hours, and hours of MRIs on my brain and spine, where a 1.5cm (half inch) mass was found in my spinal cord between C2 and C3. A really, really crappy place to have a mass.
Here I was, engaged, planning a wedding and life with my husband, thinking about our future family and suddenly my world was crashing down around me.
I met with a neurologist who said “I don’t think this is MS, and even if it is, I can’t diagnose you with it since you’ve only had one event (flare)” She sent me to a Neuro oncologist because she felt it was probably a tumor. He looked at it, sent me for more MRIs, CT, more blood work than you can imagine, and did a spinal tap (which was absolutely horrible, made worse by the fact that I have “unique spinal anatomy.” Because, of course I do…) My spinal fluid came back pristine, and slowly my symptoms subsided. My neuro oncologist brought my films to the Tumor Board (a group of super smart oncologists who look at tumors and try to determine what they are and how to best treat them. They didn’t have any suggestions other than “Well, tumors don’t just shrink on their own, and if the symptoms are getting better, it must be shrinking.” But maybe it’s an astrocytoma or a glioma, or some other type of scary tumor that just isn’t malignant…yet. So, the plan was to watch and wait. They wanted me to get another MRI in 6 months, and then every year. But I didn’t have insurance and was no longer eligible for the Hospital’s “charity” so, since I didn’t have symptoms, I just waited. As soon as I had insurance again, I made appointments but then COVID came along and wrecked those plans, too.
Finally, in January of this year, I was able to get a spinal MRI. The spinal lesion that had been a constant worry for over decade was smaller. Half the size. This was great news, but I was still worried about my brain. Over the past couple years I’ve had vertigo, headaches, hearing issues, vision issues, fatigue, and other symptoms that had always been chalked up to my Hashimoto’s hypothyroidism, anxiety, allergies, and just being a busy mom. But I knew something wasn’t right, and having one lesion that was never diagnosed has always left me worried that another could appear. Fortunately, my amazing doctor listened to me, and sent me for a brain MRI when I requested it.
The results came through my portal the next morning. The news wasn’t good.
Lesions in my brain, one prominent, two very tiny, “Likely represent demyelinating lesions.” After a call with my doctor, he referred me to the MS Center at our local hospital. I met with my new neurology team, who reviewed my MRI results with me and determined, without a doubt that I have MS. Fortunately, my MS is “mild” at this point. It’s not aggressive, and it’s a good sign that I have gone so long without any symptoms. He told me that he rarely sees patients at this stage of disease because most people wouldn’t discover it at the point. Most folks come in having lost vision, or experiencing sudden paralysis or at least sever weakness. However, MS is an incredibly unpredictable disease, and there is no way of knowing if I’ll continue to have little to no progression, or if everything will speed up. I was given options. I could wait it out, see if I have another flare or more lesions show on my next MRI a year from now. I could go the conservative route and try some of the less intense medications. Or, I could treat it aggressively with the top tier meds. My doctor said “It all depends on what level of disability you’re comfortable risking. ”
The answer to that is none. So, I have decided to treat this aggressively. I’ll start meds as soon as possible. It will be a monthly infusion, that will hopefully prevent future lesions. There are possible side effects, some boring, some scary, but the (very low) risk is worth the reward.
So that’s a lot of words to say, I’m really scared and sad and angry, but also hopeful. Honestly, it’s not the physical symptoms I’m most concerned about. Could I end up needing a cane or a wheelchair? Yup, I could. I’m mostly ok with that. It’s to potential cognitive issues that scare me the most. Like I said, the disease is completely unpredictable, I have no idea what will happen next. But there is some relief that comes with finally having a diagnosis. When you have a mass of unknown origin in your body, you never stop thinking about it. For years I was worried about”What ifs” What if it IS a tumor that suddenly turns malignant? What if it starts growing again and leaves me paralyzed or dead? What if more tumors grow? What if it IS MS? Well, now I know and we can treat it. Now I know WHY I feel the way I do and why my body doesn’t always work the way I want it to. Now I know it’s not in my head. (Even though it is literally in. my. head.)
I have to say how incredibly fortunate I am to live in a place with such incredible medical care. I am grateful to have an MS Clinic here where I have access to the most knowledgable doctors, and a team of other health care workers like Occupational and Physical Therapists on-site. I am also feel so grateful that I have supportive friends, coworkers and bosses, and of course my incredible family.
So I will learn to live with this, and fight it when I need to fight. I’ll likely write a lot more about this as I go through it. I’ve never hidden any of my life’s challenges, and feel that my journey may help others in the future. Like my adoption story and postpartum journey, if I can help one person, it will be worth it.
Thanks for reading, and please don’t treat me any differently. Ask questions if you have them, don’t make assumptions. I’m still the same Sarah.