Just when I felt comfortable with my diagnoses and symptoms, I fell – literally. I had no idea how much a simple fall could change my life. The good news is, I have new answers to old questions, and I’m better at asking questions and researching providers I trust with my health.
After my fall about a year ago, I learned I needed surgery. At the time, my headache diseases were well managed, so I was nervous to rock the boat. Unfortunately, my surgical outcome was something unexpected. My pain was severe and diffuse, and to make matters worse, my surgeon wasn’t listening. Four months later, I was diagnosed with Complex Regional Pain Syndrome (CRPS) in my foot and leg. Surprisingly what led to this diagnosis was me speaking up for myself and demanding the surgeon listen. He didn’t listen, but he transferred my case to another provider who did listen. Unfortunately, time wasn’t on my side and I needed expert help.
Researching Providers
My first stop was a local pain management clinic. When they kept confusing my rare diagnosis with low back pain (a common diagnosis within their clinic), I went back to Google. I found a provider who was not only willing to listen but showed understanding of my specific symptoms. However, his recommendation was a spinal cord stimulator. I had really hoped he would have another option, and I struggled with the decision. What my journey up to this point had taught me is not just any surgeon will do. I need a surgeon who understands me and my symptoms, and that was the only reason I finally felt able to move forward.
Uncovering Old Symptoms
Part of the process for getting a spinal cord stimulator is an MRI of the thoracic spine. When I got the results, I was shocked at what they revealed. About 13 years ago, an MRI revealed lesions on my cervical spine that the radiologist identified and mentioned might be Multiple Sclerosis (MS). However, I couldn’t get a doctor to follow up with me or refer me to a specialist. In 2018, when I developed bilateral trigeminal neuralgia, new scans also highlighted this finding. Frustratingly, doctors still shrugged. I felt like MS could explain so many of the symptoms I had experienced over the years, but again, they refused to refer me. This time was different. Not only did I see the radiologist report showing my thoracic spine was now affected, the radiologist could see my cervical spine was affected as well. The radiologist was adamant I be seen by a specialist in CNS demyelination, a neurologist who specializes in immunology. The biggest surprise was the call I got from my doctor telling me this was serious, wanting to get me a referral to my clinic of choice, and wanting me to follow up immediately.
At my appointment with the Neuroimmunologist, I finally felt seen and heard. She explained that my story isn’t uncommon. I’d been told my severe fatigue, nerve pain, urinary, and other symptoms were simply migraine and fibromyalgia. She did follow up testing to rule out other similar conditions, and just a few weeks ago, I received my MS diagnosis.
Overwhelmed, but Prepared
Receiving these new diagnoses has been very overwhelming. However, I have the tools I didn't have before. When I found community and advocacy for my migraine and cluster headache diagnoses, I knew just about nothing about my diseases, nor how to advocate for myself. While I’m still feeling very overwhelmed at not only the MS diagnosis, but navigating the CRPS, I know where to find resources, community, and support. I have already connected with resources from my doctor’s offices, social media groups, and non-profits. I have found programs similar to those in the headache space that help patients navigate their diagnosis. I’m overwhelmed, but I’m informed, and prepared. I have questions and I’m not afraid to ask them.
One of my recent wins was asking for a new-to-market medication for surgical pain. Typically, I recover from surgery with no pain medications because I don’t respond well and don’t tolerate what I’m typically prescribed. This time I asked for something new that I researched. Insurance of course wanted a prior authorization, but I have a doctor’s office willing to fight for me. They called, and the insurance approved the prior authorization in 24 hours.
Being overwhelmed is a constant theme in my life right now. However, I have the confidence and tools to help navigate the waves of overwhelm and ride them much more smoothly. I’ve had anger at the doctors who didn’t listen and frustration that my MS has progressed so much in 13 years causing damage that cannot be undone. But alongside these emotions, I also carry hope. Hope that is helping me take the right steps, walking into my new disease states, and finding ways to weave this new part of my story into my advocacy work.