What The MS?!!!!!

About 6 months after having my one and only child, I started to notice that I really was not myself. I forgot people’s names, mixed up words in sentences while speaking, struggled to read aloud to my class of 25 fourth grades, tore and crumpled up page after page of chart paper with lessons, groups, routines, and examples on them before the school day even started due to numerous spelling errors and writing that was barely legible at times.

I tried to keep my symptoms to myself

I lost lesson plans, papers I had to correct, and worksheets for students to do during class. I walked around my classroom like a drunken sailor leaning onto desks and seats so I wouldn’t fall down. The only people who noticed what a mess I was were two close friends that also happened to be colleagues. I kept the mountain of daily blunders to myself as much as possible because I was scared to death that I had a brain tumor. So instead of addressing that fear head-on, I kept about my daily business as best I could until my two friends insisted I call my doctor.

The first doctor I saw was so attentive

Fortunately for me, I lived in a city plush with some of the best hospitals in the United States, Boston. Upon seeing my physician, shortly after I called to make an appointment, she was on it. She PAID ATTENTION to me. She ordered blood tests and MRIs.

Two days later I got the good news that I had Pernicious Anemia. Pernicious Anemia presents very similarly to MS and in the early 1900s, was still a death sentence. I danced at work when I got the news! I excitedly told my friends and my boss that everything was a-okay! All I had to do was give myself injections of Vitamin B-12. I could move on with my new life as a mom to a beautiful 15-month old baby girl.

After receiving my diagnosis, my doctor ordered more tests

BUT, my doctor suggested I just get the MRIs because they were already scheduled and would rule out any other concerns. To her I agreed, “Oh, yes, let's do that to rule everything out.” However in my head, I was like, “WHAT THE _____? I will get them because what’s the big deal BUT I am OK.”

We're new parents - we'll do these MRI's and then have a date night

Two days after the CELEBRATIONS of having Pernicious Anemia, my husband and I went back to MGH for the MRIs. So, we are relatively new parents, haven’t gone out much, thinking we’ll get these tests done, and then we’ll go across the street to Harvard Gardens for some dinner and a couple of drinks. Perfect!

Well, that date night was quickly nipped in the bud while I was in the MRI. The technician called a doctor, and the doctor said, “things don’t look right in your head.” That’s not exactly what he said but it sounded like Three Little Monkeys Jumping on the Bed. What he really said is, “we are going to call transportation to take you to the Emergency Room.” Basically that is all the specifics I remember of that night other than waiting to be seen in the ER and speaking with a lot of different medical professionals. I don’t recall anything vividly until my husband and I were told I needed to be admitted to the hospital to run more tests. I don’t believe there was any mention of MS at this point. I know I was frightened. Maybe, I did have that brain tumor after all and was going to die quickly.

We began to do so many different tests to find answers

When we landed on the Neurology floor and began a series of meetings and tests with doctors, I started to feel a little better. They appeared to be all over whatever the hell was wrong with me. I was at one of the best hospitals in the world. I was safe.

Memory tests, balance, strength, occupational therapist, physical therapist, doctors and their students, batteries of tests all topped off with a cherry on top, THE SPINAL TAP. DUN, DUN, DUN. My husband and sister were there with me for that one. Holding my hands, reassuring me, distracting me, and of course, the doctor with the skilled, steady hands who made sure it was as pain free as possible was there, as well.

I was told 'you have MS'

At that point, I believe I had only been in the hospital for one night, but I wouldn’t rely on my memory. It must have been the following day when three doctors came into my room to give me the good news. “You have Multiple Sclerosis. It is the BEST kind of MS you could have, Relapsing Remitting (RRMS). There are two other kinds, Primary and Secondary Progressive MS. RRMS is the BEST one.”

“Whoo hoo! I don’t have a brain tumor, I am not dying, I have the BEST MS out there!” The doctors explained to me that having RRMS is the most common disease course. According to the National MS Society, it “is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called relapses or exacerbations – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.” Luckily for me, the doctors assured me that I could choose to go on disease modifying drugs that would help prevent exacerbations. “Yup, sign me up!”

What I learned about MS

I was now on TEAM MS and thought my life would return to normal in a week or so. It didn’t, it hasn’t, and it never will.

Now, I think it is important to share that my only knowledge of MS was from a relative. We didn’t know what kind of MS she had or if she was on any medication for it. The only thing we knew is that she spends a lot of time at home in her chair, she goes to church and to the hairdresser, and she uses a cane to get around.

I knew I was never going to be like her. I was younger and active.

What I soon learned is that it didn’t matter that I was younger and active. She was younger and active before she had MS. She ran a bed and breakfast. She walked miles a day. She was younger and active when she was diagnosed.

MS wanted me to learn my lesson fast. It is UNPREDICTABLE and DEVASTATING. And it was.