31 Days of MS: MS Is Unpredictable – Be Your Own Advocate

Photo courtesy of Kali Thomas

Day 6 of 31

This is Kali Thomas’s story:

Just a few months after my 21st birthday, in July 2013, I received a call that would change my life forever. I will never forget my doctor’s words: “I’m looking at your MRI, and I believe you may have a disease called multiple sclerosis.”

I was devastated. Shock turned into anger that turned into denial, all by the end of the night. The next day I had an emergency lumbar puncture that confirmed my doctor’s suspicions. I knew then my life would never be the same.

Being diagnosed at such an early age was terrifying. At the time, I barely knew what MS was. I found myself constantly seeking information. I read books, searched the internet, bombarded my MS specialist with questions, and even joined a handful of support groups on social media. Unfortunately, nothing could prepare me for what would happen four years later.

In 2017, on top of nerve pain, brain fog, muscle spasms, and severe fatigue caused by MS, I started experiencing pain in both hips. Being incredibly stubborn, I decided at first to just live with it, assuming it was yet another weird MS symptom. I continued working 40-hour weeks until it got so bad my husband had to take me home in a wheelchair. Nothing relieved the pain.

After seeing an orthopedic surgeon and undergoing tests, I was diagnosed with yet another disease I knew nothing about: avascular necrosis. It’s the death of bone tissue caused by a lack of blood supply.

You might be wondering how this is related to MS. At the time, so was I. That’s because, despite two steroid infusions, not a single doctor or nurse had warned me about the risk of avascular necrosis. There I was, only 25 years old, being told my hips were basically dead and there was no chance of saving them. I had both hips replaced within the year.

If you take one thing away from this, I hope it’s to be your own advocate. Always ask questions. MS is an unpredictable disease full of surprises. Treatment complications don’t have to be one of them.

Multiple Sclerosis News Today’s 31 Days of MS campaign will publish one story per day for Multiple Sclerosis Awareness Month in March. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofMS, or read the full series.