The Struggle to Overcome Years of Being Misdiagnosed
On July 5, 2017, I heard “cervical dystonia” for the first time in my life. I askd the neurologist sitting across from me, “What is it?” He stated, “It is a neurological movement disorder — a rare disease, with no cure.” I asked, “How do you fix it”? He replied, “There is no cure. You can take Botox injections, and do meditation — no stress or worry.” Our visit was over in less than 15 minutes. I grabbed my purse, told him “thank you” and left. As I started walking to my car, all I could hear in my head from that conversation was “rare disease, no cure.” It played over and over. As with many other people who have just heard those words, it puts you in a blank state of mind. Then you begin to think: How did I get this? How long have I had this? What am I going to do now?
I struggled daily with the pain, the anxiety, and high blood pressure. I wanted answers and I wanted to be fixed. I googled everything I could on cervical dystonia. Nothing I read was good enough for me. I was a single mom, independent, struggling with health, and then it all stopped in my tracks. I kept saying, “Why me?” I had struggled being a single mom and didn’t need this. My mind was overloaded, I just wanted answers. I would wake up crying and go to bed crying.
In March of 2018, I went for a second opinion at Baylor’s neurology center in Houston. I had my support team with me: my parents and boyfriend. I’m 45 years old and I made them go into the room with me to see the doctor because I knew there was going to be something I was going to miss. And those words echoed again. “You have cervical dystonia, a rare muscle movement disorder with no cure.” Even my dad and boyfriend were asking the doctors questions, as they have all seen me in and out of the hospital with pain and high blood pressure (stroke level at that). A new life journey was about to begin for me. I received my second opinion that I wanted, and now I had to cope.
I didn’t cope. I tried to start putting the puzzle pieces together from my family doctor, cardiologist, and neurologist. This rare disease was getting the best of me, and the pain was unbearable, regardless of what I tried. There were days I couldn’t and didn’t want to get out bed.
At the age of 23, I was diagnosed with high blood pressure. No doctor could tell me why. Now, I’m dealing with high blood pressure and cervical dystonia. The puzzle pieces were coming together. Apparently, my cervical dystonia had been misdiagnosed for many years. Now the answers were coming together. The pain was giving me anxiety and causing my blood pressure to spike. My body had been totally exhausted with the blood pressure spikes.
During the last few months, I received my Botox and started new blood pressure meds, as well as anxiety meds. I’m finally getting “me” back after the struggle for the last three years.
As I sit back and think about all I have went through and what I have overcome, I know each day I will improve — mentally and physically.
My attitude about my condition has turned those previous tears into smiles. I know what to do if my blood pressure spikes. I know what to do when my body goes into anxiety, and I know what to do to try to eliminate the pain. It takes baby steps to overcome fear and something you have had for so long that was misdiagnosed, controlling every step of your life.
We all feel alone in a new journey, mine happens to be cervical dystonia. But in fact, we are not alone. We have each other posting on websites going through the same thing. I am also lucky to have the support of family and friends, my partner, and even my employer.
I know in my case, if it wasn’t for my family, my boyfriend and my bosses, I would have 1,000 more tears, but I have watched them all stand by my side and support me with this disease that has taken up so much of my time.
I am extremely grateful and blessed to have them all in my life. The tears still come, but the smiles are coming back after this long journey of accepting and coping.
We all feel lost sometimes, but there is always some one who will be by your side, so you don’t have to do it alone. With time, those tears will turn into smiles again.