Janice Dean: This is #MS -- My journey with multiple sclerosis

My doctor called me at home a couple of weeks ago after receiving my latest round of MRIs.

I was diagnosed with multiple sclerosis 13 years ago. This test is one of the only ways my neurologist can know for sure that my MS is acting up again.

I was sitting at the kitchen table with my neighbor Dervla and my husband Sean, having tea and leftover doughnuts from our son Theodore’s 7th birthday.

The phone buzzed, and the doctor’s office number came up. I had been waiting for a week for test results. She had them.

March is MS Awareness Month, and I want to spread a message of love and hope to those who live with this illness or have a loved one that was diagnosed with it. Please know you are not alone. This is my letter to all of you.

“Hi Janice. Sorry to bother you at home on a Friday night,” she said.

“No problem,” I responded. I stood up from the table and my husband nodded at me. He and Dervla knew I had to go into the other room. I walked into the bedroom and shut the door.

“So your MRIs came back,” my doctor said. “Your brain is clear. But I see new activity on your spine.”

In patients who have MS, the body’s immune system attacks the protective coating surrounding the nerves of the central nervous system. An MRI (magnetic resonance imaging) can reveal telltale scars (also called lesions) on the brain or spinal cord.

I felt a punch in my gut. I haven’t had any new lesions on my spine in years.

The doctor named the exact sections on my spine where she was seeing these new spots.

“How are you doing on the new oral medication?” she asked.

I admitted to her I hadn’t started it yet. I was waiting until the weekend to try it because of all the possible side effects. I didn’t want a bad reaction to happen while I was working.

“Hmm,” she said. “What about trying something different? We just did your bloodwork and you are a good candidate for an infusion therapy.” She went over the possible side effects, including the risk of a brain disease that could potentially kill a person.

“Oh wow. That’s scary,” I said under my breath.

The doctor told me that yes, there is a very small chance that someone could get a rare brain infection, but that I would be monitored closely while on the drug and the minute the medical team saw any changes in my blood or my behavior they could take me off the drug.

The upside of the drug was tremendous and many MS patients love being on it. Instead of an injection every day or three times a week, or a daily pill with dozens of possible side effects, it was an infusion once a month, when I go to the doctor’s office.

The maintenance is easy, and the efficacy of this drug has been very good since it was introduced on the market for what’s commonly called relapsing remitting MS.

The vast majority of us who have multiple sclerosis have relapsing remitting MS. This means there are periods of active inflammation (part of the body’s immune response to heal) in the central nervous system (brain and spine), and during that time symptoms worsen and new symptoms may develop.

With relapsing remitting MS there are times when the symptoms are not as noticeable, and we feel like normal human beings. The quiet periods between relapses are called remissions – and remissions can last months or years. In my case, it’s been years since I’ve had anything to report or show up on my MRI scans.

My doctor reassured me that I was young (I love her) and active and doing great. Even if this new drug helped keep my immune system from gnawing away at my central nervous system for only a year or two before I potentially go on something else, it might be worth trying.

(Just a note here for those of you who have MS or have a family member or loved one that has been diagnosed: I do not want to single out or endorse any MS drug or therapy. Every person that has MS is different and should rely on their doctors and health care professionals to guide their decisions on what works best for them. One person’s choice is not necessarily the best for someone else).

When I got back to the kitchen after talking to my neurologist I was shaking. Dervla has known about my MS, but she doesn’t ask me about it that much. She just takes cues from me on whether or not I want to talk about it.

I told her and Sean what the doctor had just said over the phone – and the reason why I had to leave the doughnut and tea party.

Sean got up to the fridge and asked if we wanted to switch from tea to a bottle of wine. Bless my husband. He opened the Pinot Grigio.

I told them both what was going on – the risks. The new lesions. How scary this all was again. I was doing so well, and now a setback

I like to compare MS to the weather I predict. The threat is there for a thunderstorm, it’s the when and where the lightning strikes that is impossible to forecast.

I’ve been doing so well for so long and now we have to get more aggressive. And I’ve been feeling crummy for months. With MS, the battle is internal. On the outside, those of us with the disease look just fine. One of my fellow MS friends calls it the “my you look so well disease,” because people will often say: “I’d never know you had something wrong with you. You look totally fine.”

Looks can be deceiving. Some of us call MS the invisible illness because our body is at war with itself internally. So although we may look fine, the storm could be raging inside of us.

My friend Meghan McCain, who has been going through her own personal journey with illness, said something that brought me to tears.

We were talking about the new medicine I was about to go on. Her dad, Sen. John McCain, was diagnosed with a rare form of brain cancer, so she has been through her share of hospital rooms and doctor’s offices, and read all about side effects from medications.

After I told her what my treatment entailed she said: “Can I come and keep you company sometime when you get your medicine? I know how scary and lonely that stuff can be.”

It made me realize that saying something as simple and as heartfelt as that – coming to sit with us while we visit the “treatment room” – has more meaning than most people could imagine.

My kind neighbor Dervla also followed up from our tea/wine party asking if I needed a designated driver to take me to the doctor’s office. My husband Sean came with me for my first trip, but I told her she’s on the list for some girls’ time in the La-Z-Boy with my infusion drip next month.

That goes for my work family at “Fox & Friends.” Co-anchor Ainsley Earhardt stopped to chat with me after she heard I wasn’t feeling well and said a prayer with me in the hallway near our offices. She told me she envisioned God’s robe covering me from destruction, illness, pain, suffering or ailments.

Then she said: “Janice I am praying now that God gives you a long, healthy, protective life. I pray a hedge of protection strong enough that sickness can’t penetrate.”

I get choked up just remembering that moment. In the hallway. With my friend.

My senior producer Kelley Kramer sent me this email before I went for my doctor’s visit: “THINKING OF YOU. SENDING LOVE TODAY… AND ALWAYS. MANY PRAYERS FOR YOU TODAY.”

And Don Presutti, our tech manager, who came up from the control room to find me after he heard I had a setback and just asked to give me a hug of encouragement. The list goes on. These are wonderful friends.

Sometimes all we need are a few words of encouragement to get through the day.

I’ll never forget what my husband Sean said when I was first diagnosed: “This illness does not scare me.”

That was after I told him I may end up in a wheelchair someday.

And my sweet boys Matthew and Theodore give me strength and courage every time I look into their eyes.

March is MS Awareness Month, and I want to spread a message of love and hope to those who live with this illness or have a loved one that was diagnosed with it. Please know you are not alone. This is my letter to all of you.

My doctor tells me we are close to putting all the puzzle pieces together and, at the very least, getting to an understanding of how MS works and how we might be able to stop it one day. Perhaps there might even be a cure in my lifetime.

To those wonderful friends and family, keep those emails, notes and words of encouragement coming our way. Because together, we are stronger.

If you would like to find out more about MS, treatments or how to donate, I encourage you to find out more here.

Together and Stronger.