Jane here, welcome to our second piece. Emily will be writing soon, and we’ll also have guests joining us for interviews to share their stories in the following weeks.
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Last week, I shared a brief overview of the last 20-years living with MS. Hopefully it whet your appetite for more to come.
Most people with multiple sclerosis that I’ve spoken to over the years have a diagnosis story. They can remember where they were, who told them, the words that were spoken, and how they felt when discovering that they have been diagnosed with MS. Here’s my story.
In August 2001, I was 28. My husband was at work and Emily, eleven months old at the time, was napping. My cell phone rang.
“Hello, Jane?” the voice asked. “This is Dr. X. I have some news for you.”
“Hi, yes it is,” I said. Knowing this was going to be that conversation.
“You either have a tumor in the base of your brain or multiple sclerosis,” the doctor said. “I cannot tell you which yet, but am sending your MRIs to our labs in LA. The team of doctors there will take a look and let me know soon.”
“Oh, got it,” I said.
“Unfortunately, if it’s a brain tumor it is inoperable due to its location. If it’s MS, there’s no cure. My advice to you though is not to research MS on the internet. The results you get will not be good. You’ll either be dead or in a wheelchair in a few years.”
“Ok. Thank you.”
“In the meantime, we’ll get you in for three days of intravenous steroid treatment to reduce the swelling in your brain and to try and reduce your symptoms.”
Even though I had a feeling that something bad was going on with my body, I was stunned. Cancer or MS. I had some knowledge about cancer - a couple of my parent’s friends had it. But the only thing I knew about MS was from my childhood. A girl’s mum at my elementary school had MS. She was beautiful and I found her fascinating. She was tall and slim and wore a long, elegant camel coat. She had chin-length blonde hair and pale skin. Sometimes she’d walk unassisted, other times she’d have a walking stick, and on occasion, she’d be in a wheelchair. Because I always noticed her, I also observed her absences which were many. She rarely attended school events or came to pick up her daughter after class. I heard that she died soon after we’d left school.
During that phone call with my doctor, I stared out of the window at a giant redwood tree. That visual is ingrained in my mind. The strength of it saved me from crumbling to the floor. When I got off the phone I called my husband. No answer. I called my best friend. No answer. So, I called her husband, as sometimes they switched phones. He answered.
“Janey?” he said.
“Michael, I just got off the phone with my doctor. I’ve either got an inoperable brain tumor or MS, which doesn’t have a cure, so I’ll either be dead or probably disabled in a few years.”
“Shit,” he replied.
Michael was at a stranger’s apartment negotiating to buy their camper van in which he and my friend were about to pack their lives and move across the country. He answered my call because he had a feeling it was important. Michael told the strangers it was an emergency and excused himself to their bathroom. He and my best friend left a few weeks later. They were driving over the Bay Bridge when he lobbed the phone out of his car window into the bay. Getting rid of that phone marked the beginning of a new chapter for them. I wish I could have thrown MS out of the window and over the bridge, too.
Those next few weeks were a whirlwind of stuff and worry. We celebrated Emily’s first birthday with neighbors on Sunday, September 9 where she took her first wobbly steps. I’d completed three days of intravenous steroid treatment and was tapering off with a course of aural pills to reduce swelling in my brain. As the brain controls the body, the steroids resulted in getting back about 90% of feeling in my arm and use of my hand again. However, they left me antsy and looking like a drug addict with track marks up and down my arms. Neighbors couldn’t help but notice my swollen red “moon face”, a common side effect from steroids. I went to the hospital for brain and spine MRIs and even had a lumbar puncture. They drained some fluid out of my spine to check the fluid for abnormal cells. It gave me a killer headache, a common side-effect from having the procedure. The next Tuesday was September 11, the day of the Twin Towers, the 9/11 tragedy.
The following week, my neurologist called to confirm that he’d received word from the neuro-specialists that I didn’t have a brain tumor. What looked like a large tumor at the base of my brain and the top of my spine was in fact two lesions or plaques, synonymous with MS. It was a relief to have an answer so I knew what I was dealing with. So much had happened in such a short amount of time.
I was able to receive medicine from the neurologist for the swelling in my brain. However, in 2001, in order to receive an official diagnosis of multiple sclerosis, an individual had to meet specific criteria as determined by Professor Ian McDonald. Prof McDonald was a neurologist and academic from New Zealand, recognized as the world-leading authority on MS in the latter half of the 20th century. I didn’t meet the criteria 100% but was told that I had a 99% diagnosis. Being fully diagnosed would enable me to gain broader access to MS-specific medical treatment such as drugs and other services to help alleviate the symptoms. So, we continued testing to see if the doctor could reach a 100% diagnosis.
I had an optic neuritis test a few months later. Optic neuritis is when the optic nerve is inflamed, affecting vision. It is a common symptom of MS. The test consisted of me watching a bunch of videos with trippy psychedelic patterns swirling around the screen, but that was negative. The negative result didn’t matter though, because soon after I had another MS episode, also called an MS relapse. This time my knees buckled under me like noodles when I tried to stand up from the sofa, sending me into a pool of tears while stuck on the couch. I called my doctor and told him what happened. And there it was, criteria met. I had relapsing-remitting multiple sclerosis. The type of MS that comes and goes, sometimes for a few days, other times for a few months, but when it goes, it leaves the person completely well or slightly worse than before.
Being diagnosed with MS is particularly scary because there isn’t a cure and its trajectory is different for everyone. Some people live for years with very few symptoms. But for many, it can mean a future of disability and pain. Today there are a lot more treatments and aids available than when I was diagnosed in 2001. I remember wishing I was diagnosed with cancer because it was more black and white: do treatment which either works or doesn’t. Live or die. The idea of slowly becoming more and more disabled and gradually having things I loved taken away from me was terrifying.
I’ve endured experiences that many people will never have to deal with. I’m not going to give a cheesy sermon here about being grateful for them, as in all honesty, I’m not! I think I’d have done just fine without MS, but MS has partly shaped the course of my last 20-years which is what I’m here to share with you. My goal is to share what I’ve been through including different treatments, different people’s approaches, tips I’ve compiled, and everything I know about living with an incurable disease.