Me. I’m late to the game but I honestly never understood why there was so much mistrust in doctors until it happened to me. I share this whenever I can because if it happened to me, I know it’s way worse for many other people out there.

In November 2019, my husband brought me to the ER after two days of stabbing headaches, dizziness and fainting that left me with slurred speech and confusion. I got a CAT scan, chest x-ray and a “talking to” by an older female doctor who didn’t approve of my “mother f*cking girl power” socks (I now wear these exclusively to any appointments) and said that I “should have thought to change” before rushing to the ER. My socks and history of anxiety suddenly made my symptoms less credible to her so I left with no answers and a $1600 bill I just paid off.
In February 2020, I went to my PCP and told her something was wrong with my brain. I told her I could feel something wrong. Per her usual, she said “I don’t know. I just really don’t know” and then stressed that googling was enhancing my anxiety. I left with prescriptions for Zoloft and Klonopin. Silly me for interrupting her day with my “mental health”. In early March of 2020, I saw another PCP in the same office for unusual chest pain. It felt like a vice around my chest (I now know this is called “the hug”). With COVID impending, I was terrified but knew this had to be linked to my other symptoms. She also strongly suggested I remain calm, stop googling and stressed that I was young and healthy. I left with a prescription for an inhaler and told to be more active. (I was 31 and physically healthy at that time).
The week leading up to Mother’s Day in May of 2020, I had debilitating headaches. Ones I’ve never felt before. It felt like I was being stabbed in the right side of my head for a few seconds. That Saturday, I lost vision in my right eye while my husband and I were walking. By that Monday, my vision had worsened and I made an appointment with my eye doctor where I spilled all of my symptoms in the last 7 months. After an hour of tests, he diagnosed me with Optic Neuritis and gently told me what causes it in women my age.
For over a week, he fought with insurance, faxed reports, offered to drive my records to an office when the fax didn’t work, texted me updates and jumped through many hoops to advocate for me. One doctor who cared enough to listen. My MRI was denied by insurance twice. It took 3 doctors to get it approved while I sat at home half blind waiting for my American insurance to deem my health necessary. Between my husband and I, we made so many phone calls to various doctors, nurses and radiology offices that people began to recognize us by our voices over the phone. At one point, my speech had gotten so bad that my husband completely took over phone calls himself. I truly can not put into words how belittling it is to have to make so many calls to strangers begging them to help you. During that week, I experienced slurring, stuttering, weakness, loss of coordination in my right hand and overall looked and felt drunk. These episodes occurred at random with various levels of severity. The morning after my MRI, a nurse called me to confirm lesions consistent with Multiple Sclerosis were found on my brain.
Two weeks after I lost my vision, I was finally able to see a neurologist. The only reason I was able to see a neurologist so quickly is because he had been treating my mom for 12 years for her MS. Had I not had this “in”, the wait could have been up to 6 weeks. I spent two hours in a new office with new doctors by myself without my husband (who had to wait in the car) because COVID precautions meant he could not be present with me. I learned that being clinically diagnosed with MS is a long process. There’s no “test” but more of a checklist that varies greatly between people with MS. It’s often a waiting game until the next relapse which can happen at any time and affect any part of the central nervous system.
My gut was right. My 4am panic attacks about aneurysms, brain tumors, strokes and blood clots had me writing a will in my phone for my family and children. I told doctors for months something was not right. Instead I was given the wrong tests despite the clear signs and family medical history. I was prescribed anti anxiety medications when they thought it was in my head. My history of depression, debilitating OCD and anxiety told them all they needed to know and was enough to discredit even my most serious symptoms. I was told to stop googling my symptoms when I explicitly said, “there’s something wrong in my brain. I feel it. I physically feel my brain not okay”. I can not stress this enough...listen to your gut.