The beginning of my mess

My earliest recollection of odd symptoms was around 2017 when I recall telling my doctor that I felt like I was walking around with heavy moon boots on, I was always overwhelmingly tired and my lower body pain had been aggravatingly chronic. Getting doctors to look past the voluptuous, full-figured (aka overweight) frame was always a task. After one doctor's visit, his notes actually referred to me as "robust"! What am I?... a pasta sauce?? Lose weight. Take these pills. Have you tried physical therapy? It all became so engrained in me that I thought I was certifiably mad. Here's the thing... I wasn't. Ok maybe a little but I digress.

Fast forward through a few more years of medical gaslighting, pokes, prods, exams and pills... I was fortunate to find a functional medicine doctor who didn't abide by the traditional boundaries of a medical practice, more specifically, the bureaucratic B.S. that ALWAYS put profits over patients. Originally, I went to him in an effort to balance my hormones thinking that might solve it all. It turned out to be the best decision I'd ever made. In May 2021, I'd been in a perpetual state of frequent and silent suffering for years and unbeknownst to me, was experiencing other issues that would ultimately be explained by my diagnosis. My doctor ordered a complete MRI of my spine and brain and when the results came back, it's the kind of a day you never forget and often replay. The scans revealed demyelinating plaques in my cervical spine and white matter damage in the frontal lobe of my brain and a note from the radiologist indicating an immediate need to see a neurologist. We all know it, Googling outcomes is the devils desire to prey on our fears and weaknesses. Google said I have Multiple Sclerosis and therein lies the beginning of my mess.

For those of you who may not be familiar with the disease, here is the definition straight from the website of the National Multiple Sclerosis Society:

"Multiple sclerosis is a disease that impacts the brain, spinal cord and optic nerves, which make up the central nervous system and controls everything we do. The exact cause of MS is unknown, but we do know that something triggers the immune system to attack the CNS. The resulting damage to myelin, the protective layer insulating wire-like nerve fibers, disrupts signals to and from the brain. This interruption of communication signals causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis. Everyone’s experience with MS is different and these losses may be temporary or long lasting." My MS means an abundance of daily struggles including pain whether a severe ache or relentless nerve "zingers", extreme fatigue, severe heat intolerance, tremors and internal buzzing and my favorite....bowel and bladder issues which means accidents happen or require that I use a catheter to completely empty my bladder.

The staff worked hard and I was able to get into a Neurologist a few weeks later. I arrived with my mom (one of the virtuous support humans of this story) and was quickly met with a dry, condescending physician's assistant. When I began to explain all of my symptoms and referenced the results of the MRI's indicating possible MS, she scoffed and said I was in the wrong place because their focus was neuro surgery (even though the neuro I was referred to was an MS specialist). I unleashed a fury of uncontrollable sobs as I shared with her the years of trying to get my issues addressed and was told I would get clarity with this appointment. She was taken aback by my "outburst" and pivoted to a quick review of my scans. She was flippant to say the least when indicating it was a very "soft call" by the radiologist and likely nothing to be concerned about. She said she would consult with the neurologist and reach out to me within a few days. I received a call from her a few days later indicating she had spoken with the doctor and I had no reason to worry. I disagreed and referenced the particular areas of the c-spine MRI correlating to my symptoms to which she LAUGHED at me and said "You do know what MULTIPLE sclerosis means right? It means many, not one". I was floored. Who laughs at a patient? I immediately responded with my concern for her treatment of me indicating that she had been dismissive and condescending from the beginning and now for her to laugh at me on the phone was unacceptable. I ended the call and began my journey to find a second opinion while filing a formal complaint against her with the hospital.

My second opinion became a restoration of hope in all of the madness. On August 13, 2021, I traveled to

UC Davis in Sacramento, California to meet with MS Specialist Dr. Mustafa Ansari. The level of thoroughness and true concern for my symptoms was unmatched. From the time I met with the nursing staff to spending almost 3 hours at the clinic, I felt complete validation. From the scans to the physical exams, Dr. Ansari confirmed what Google warned me about, not only did I have MS, I have the primary progressive form based on my years of unrelenting symptoms. He was able to verify that not only did I have MS, I have multiple lesions along my spine that the other Neuro PA had missed. Ultimately, I left that day with a firm diagnosis and the flood of tears started when I realized a few things.

1. I finally had answers for what I'd been experiencing all those years and even though it changed the trajectory of the rest of my life, I could face it with knowledge and understanding. I dove head first into researching what it meant, how to manage it and leaning on others with the same experiences by way of support groups.

2. NEVER stop advocating for yourself. I get it, it's hard enough to deal with waiting times, insurance roadblocks, dismissive medical staff and getting answers when you know something is wrong but your quality of life is worth the fight. My mom raised me with a whole lot of sayings but one that's served me well is "The squeaky wheel gets the grease" so keep making noise, keep advocating and most importantly, keep living forward!