When the Provider Becomes the Patient

October 3, 2024 

“I am NOT okay.   

It has been one week since I was diagnosed with MS.   

I am NOT okay with this.  I don’t accept this.  I have cried every single day for the past 7 days.  I cry multiple times a day.  I wake up in the middle of the night crying.  I can’t stop crying now.  I am so scared.  I am so sad.”  

Like so many people living with MS, I can tell you the exact date my world flipped upside down.  It all started with my doctors and an “incidental finding,” which “probably meant nothing,” until it meant everything. 

My Path to Diagnosis

My MS diagnosis did not happen in a typical way. But then again, MS is rarely typical. It’s a condition that is a truly individual experience and looks different for everyone. For me, it all started with a clumsy moving accident, where I accidentally hit my head, which resulted in a concussion.  I’ve never had one before, but I had a lot of problems with the concussion, including dizziness, tinnitus, clumsiness, and fatigue. I could not tolerate loud noises or bright lights. When the issues didn’t go away, my doctor suggested an MRI, and that’s when they found brain lesions.  As with many patients who go down this road, I had to follow up with a lumbar puncture (LP) and additional MRI imaging of my cervical and thoracic spine.   

So, what was going on during all this time? Suddenly, I was navigating two complex conditions at the same time, and I entered a world where my providers, including neurologists and PT, had a hard time differentiating my symptoms between the concussion and MS.  I was struggling with the trauma of a brain injury and the shock of an accidental finding of a devastating diagnosis. It was not fun hearing from my providers, “I’ve never had a patient come to me this way.”  

Emotionally, I was a mess.     

The Reality of Provider and Patient

As a physician assistant (PA) working in psychiatry, I had a good baseline education about MS, and a couple of my initial providers gave me more credit for understanding the diagnosis.  When my lumbar puncture results came back positive for oligoclonal banding, I tried to make sense of it, and I wondered if it was related to the concussion or even the fact that I had a long history of Hashimoto’s thyroiditis.  

So, when a well-meaning provider said, “You’re a PA, so you already figured out you have MS,” I burst into tears.  No, I had not figured it out.   I was shocked and thought there was a huge mistake.  My husband was speechless, which is rare, and I was a huge bawling mess.  I could not stop crying, and I remember thinking, “He’s been in here about 10 minutes, and he’s going for the doorknob.”    

I understood the realities of being in healthcare, since I am a healthcare provider too, and I know that there are the next patients lined up for their 15-minute slots, so I get it, but it did not feel good as a patient.   

Finding My Community

Realizing that I needed more support, I started building my community. I contacted a group of PA Moms and started asking questions. From this amazing group of moms, I was connected to an MS group coach, advised to start the Wahl’s protocol, and given a referral for counseling with a grief counselor.   

I also called my prayer circle in and requested help from my close circle of family and friends.  So, at this point, it may sound like I was “getting it together,” but I was far from it.  I cried at every doctor’s appointment, and I barely told anyone about the diagnosis.  I had a couple of very negative experiences disclosing my diagnosis, so I kept it on a need-to-know basis.   

The Ups and Downs of Diagnosis

This experience was filled with uncertainty, and it was an emotional roller coaster.  Not only do I remember the date I was first diagnosed with MS, but I remember the date I was told I did not actually meet the criteria for MS. So, for about 5 months, I believed that I did not have MS and was thankful that I did not wake up every morning with that thought in my head. Unfortunately, to add to all the emotional turmoil and confusion, I was then diagnosed with CIRS (chronic inflammatory response syndrome), MCAS (mast cell activation syndrome), high mold levels, and candida.  Added to the mix, I had a follow-up MS check-up on April 1, 2025, and I learned that a C2 lesion had not been reported in a previous MRI, since the radiologist believed it was an artifact, but it had been identified in the more recent MRI, thereby meaning that I did in fact meet the criteria for MS (again).   

I mourn what life felt like before I was given devastating news.  I have moved up and down and all around the stages of grief.  I’ve found myself grappling with huge decisions, such as, should I try to do stem cells?  Or should I go ahead and do the DMT ASAP, which I have most recently been advised.  It is so scary.  I researched and asked a lot of questions.  I still haven’t learned the rhythm of listening to my body to pace myself according to my energy levels and the brick wall that hits me sometime.   

Finding Strength Through Change

This diagnosis has caused me to make major changes in my life.  I’ve lost 55 pounds, and I’ve never steadily eaten healthy until now.  A major autoimmune disease was exactly what it took for me to finally go gluten and sugar free.  I have adapted the Wahl’s protocol to fit me, and I eat to nourish and heal my body.  I am intentional about relationships, exercise, and my faith.  My previously fast-paced life has slowed down, and I go to physical therapy twice a week.  My focus is on intentional steps to heal.  Along the way, I have become an MS activist and fundraiser for the MS community – my community.  I have also started writing again, so be on the lookout for my next upcoming children’s book.   I would never have chosen this path intentionally, but I am now taking one day at a time, trying to heal, grow, rely upon the Lord, and make good treatment decisions.   

About Can Do MS Voices

Can Do MS Voices shares the personal stories of people living with MS, their care partners, and the professionals who support them. These stories remind us that no two MS journeys are alike, but together, we can learn, grow, and find strength in community. 

If you have a story you’d like to share, we’d love to hear from you. Contact us at info@cando-ms.org to be part of Can Do MS Voices.