My nerves felt like they were being unplugged from this reality

What started as a tingling numb feeling spirals into 24 hour symptoms and countless visits to the hospital. Jonathan from the United States describes his MS diagnosis journey – the confusion, the tests, the medical fees. The vivid imagery Jonathan uses transports you to that moment in time, depicting the overwhelming questions, the search for answers, and the loved ones holding him steady. Read his story:

“In 2019 I had just gotten engaged to the love of my life.

I was 28 and we were traveling the world living life, growing our business, and I had just received my BlueBelt in jiujitsu and that was one of my favorite accomplishments besides getting engaged.

Then I woke up in early January of 2020, and I couldn’t feel my big left toe. It was numb and tingling.

I was physically active so I thought it was a mild injury from jiujitsu or something.

Then it spread… fast. I couldn’t feel my left foot or left hand. The tingling and numbness spread throughout my entire body. I visited the emergency room and even saw a neurologist. The physical exams they did on me were “unremarkable”, as doctors say when they see nothing wrong.

It was a jarring experience to feel like i was losing control of my body. The symptoms spread and progressed day after day with no signs of it stopping. They persisted 24/7.

My nerves felt like they were being unplugged from this reality.

I Ubered to the emergency room on January 24th.

They put me into a CT scan.

They were shocked.

Then they told me I needed an MRI and would have to wait 5 hours, but they threw me into the MRI within

5 minutes and that’s when I knew it was serious.

They admitted to the hospital. The neurologist visited my room and I told him, please be honest and don’t sugar coat it.

He said, “It doesn’t look good”.

He then ran after the radiologist that just left their shift, so they could perform an emergency spinal tap on me. They drew my blood multiple times a day.

Negative. Negative. Negative.

Most, if not all exams, came back unremarkable,

except for the 30+ lesions throughout my Central nervous system.

The doctors warned me that my case was so grave, that there was a chance my heart and lungs might stop working because of the large lesion in my brain stem. Within four days of admission, they performed a brain surgery for biopsy, to figure out what was going on.

After 11 days in the hospital I was diagnosed with ADEM (Acute Disseminated Encephalomyelitis) and was sent home.

The following six months was filled with me desperately looking for more answers as to what happenedand why. More blood work, MRI’s, and exams.

In July of 2020 I was officially diagnosed with MS and I started treatment just one month later.

Was I still going to be able to walk my wife down the aisle?

Was I going to lose my ability to walk, run, or see?

My life felt like it was over and Dr. Google painted a grim picture of how cruel MS can be on people.

In 2020 I lost more than just my peace, identity, and brain. I also lost my uncle, grandma, and father within months of my surgery. 2020 felt like a type of hell. My loved ones were the angels keeping me up when all I wanted to do was give up.

I know what it’s like to feel like it will never get better, because for months, I felt numbness and tingling throughout my body. I couldn’t balance, my head was spinning, I felt my eyes crossing uncontrollably, and there was electric shocks running down my spine along with many more symptoms, 24/7. While living with these symptoms I also spent most of my time trying to deal with the hospital bill that came out to more than five hundred thousand dollars..

My brain scans consistently showed 20 plus lesions in my brain, and 17 lesions in my spine.

And here I am today, one of the lucky ones, standing able to tell my story of hope for those that have none.

My journey to diagnosis wasn’t easy and it tends not to be for most of us living with MS.

I’m grateful to be sharing my story with you and it’s thanks to all of the medical professionals, the advancements in treatment, and my unrelenting will to live a healthy lifestyle that has kept me relapse free since 2020.

Thank you, and I wish you and your loved ones infinite blessings.”

Jonathan was one of the incredible contributors of the My MS Diagnosis animation. You can hear his voice and see his story animated below. Our thanks to the National MS Society in the United States for connecting us to Jonathan.