A Doctor Said Her Extensive Symptoms Were All in Her Head—She Proved Him Wrong

I will never forget the moment my 5-year-old daughter asked, “Mommy, are you going to die?” I froze. The truth was, I didn’t have the answer.

Nearly 30 years ago, after months of being dismissed by doctors, I was diagnosed with multiple sclerosis (MS). I had gone from being vibrant, active, and engaged to someone who couldn’t get out of bed. My body was rapidly failing, and I was fearful I wouldn’t be able to give my daughter the love, protection, and guidance she would need to navigate this world. I was also facing a new future—one riddled with uncertainty.

My MS symptoms started with my eyesight. It was September 1993, and I was sitting at my desk in front of my computer when suddenly, I saw duplicate computers standing side by side. I reached my arm out to touch them, to see if what I was seeing was real and suddenly, I had two right arms. I closed my eyes tightly, shook my head, opened them again, and everything was back to normal. One computer and one right arm. But the vision problems didn’t end there. Double vision, or seeing holes in words that I was reading, would happen regularly.

Then came the exhaustion at a level I had never experienced, followed by numbness in my left foot that would eventually travel up my leg, and eventually a loss of bladder control. One day, I was in a dressing room with my young daughter when she looked at me and said, “Mommy, are you going potty?” I looked down to find a puddle of urine at my feet. The loss of sensation in my leg kept me from feeling anything running down it. I was in disbelief and felt humiliated. When a store employee called out asking if I needed help, I was too embarrassed to tell her what happened. So, I quickly left the store. 

As my symptoms progressed, I received misdiagnosis after misdiagnosis. I would even take that a step further to say that I was completely dismissed.

My optometrist told me I was having eye fatigue from the computer. My primary care physician told me that I was sleep-deprived from being a working, single mom. My bladder issues were blamed on my pregnancy from years prior. A neurologist dismissed all of my symptoms and told me I was experiencing migraines, even though I informed him that I wasn’t having headaches. 

All the while, I was doing my own research and a family friend mentioned MS. This was the early 90s, and very little was known about the disease. My father took me to see a second neurologist, who would light a fire and fury under me like I had never experienced. 

In that appointment, I shared my symptoms and thoughts that it could be MS. He very arrogantly shrugged me off and told me he was certain it wasn’t MS. He performed a physical and went on to diagnose me with a “severe form of mental illness,” and told my father and me that my symptoms were “all in my head.”

A little more than one year after I experienced my first MS symptom, I saw a third neurologist, one who, for the first time, actually listened to me. She conducted a full neurological examination—the first one I had, even though I was on my third neurologist. 

At the end of the examination, my doctor put her hand on my shoulder and said, “Ms. Snow.” Instantly, my eyes filled with tears. Her kindness, coupled with the fact that she was the first doctor to show me the respect of calling me by my name, was nearly overwhelming. She said, “I don’t think you’re crazy. But I do think that you are very sick. And I think you quite possibly have multiple sclerosis.”

There it was. A diagnosis. I have MS. It may sound strange to some, but that diagnosis brought me relief. Finally, someone listened to me, took me seriously, and confirmed that I wasn’t crazy. I was sick. And while the diagnosis brought on a new set of questions and challenges, at least I had a starting place to figure things out.

That relief was quickly followed by grief at what this disease would take away from me and anger at what this meant for my future. I was a mother first and foremost. My daughter meant everything to me, and I wasn’t going to let this disease keep me from being the active and involved mother I prided myself on being. But I knew things were going to change. I was determined to be in control of those changes. 

One day, I received a call from my daughter’s school informing me that because of my mobility issues, I was a liability and could no longer chaperone school trips. It simply wasn’t safe. I was angry, hurt, and devastated. And because I am a determined person, I wasn’t going to let this disease stop me from being a mother.

So, I called the school back and made a deal with them. If I could no longer be a field trip mom, I was going to be the mom who went to the school every day to read to the kids (or at least every day that I could). After a little hesitation, they obliged. Reading to the kids wasn’t just an opportunity for me, it was a teaching moment for the kids. They saw what it was like for someone to live with a disability, that we are no different than anyone else. It turned into an incredible experience for the students, educators, and of course, me.  

Early in my disease, I was fortunate to be placed on the first FDA-approved drug for MS, Betaseron. But it became painfully clear that the people who made the drug had never spoken to an MS patient. While it helped reduce my symptoms, it was incredibly difficult to use, especially since MS had compromised both my eyesight and dexterity. Preparing the injections every other day felt like an impossible task.

With no cure and no real education available to patients, I became determined to change the status quo—not just for myself, but for others. So, with my father at the wheel, I drove two hours to the offices of the pharmaceutical company that made my medication. I had no plan, just a fire in me and a story to tell.

When I arrived, I insisted on speaking to someone from the Betaseron team. To my surprise, a representative came out, listened to my story, and arranged for me to meet with the entire company, Berlex. In that meeting, I shared what it was really like to live with a chronic illness. I pitched the idea of a patient focus group. I urged them to create educational materials. I told them to hire me to speak to groups across the country. 

Using that fire within me changed the trajectory of my life. I went on to found Snow Companies, a global patient engagement firm that transformed how the life sciences industry communicates with and supports patients facing life-changing conditions.

This journey ultimately inspired me to write my book, Diagnosed: The Essential Guide to Navigating the Patient's Journey to help others find their footing after a life-altering diagnosis.