The First Steps Toward Answers
After my first appointment with a neurologist in Bloomington, I learned that getting an official Multiple Sclerosis (MS) diagnosis would require an MRI to check for lesions on my brain and spinal cord. Lesions are areas where the body’s immune system has damaged the nerves, preventing signals from traveling effectively between the brain and the body. MS is an autoimmune disease in which the body mistakenly attacks the brain and spinal cord, leaving behind scars, or lesions.
The MRI itself was uneventful, but it did reveal lesions on my spine. However, that alone wasn’t enough for a definitive diagnosis. My neurologist explained that I would also need a lumbar puncture (spinal tap) to analyze the fluid surrounding my spinal cord for elevated protein levels and other indicators of the disease.
The Spinal Tap Experience
On the day of the spinal tap, my neurologist met me at the hospital. I was nervous about having a large needle inserted into my back, but he reassured me that he had performed the procedure many times. Under X-ray guidance, he began the process while I lay curled on my side to allow better access to my spine.
The moment the needle went in, I won’t sugarcoat it—it hurt! As he moved the needle around, searching for the right spot, the pain intensified. After a few seconds, I couldn’t handle it anymore, and he removed the needle to give me a break. Unfortunately, the second attempt was just as painful. Unwilling to endure a third try from him, we decided to call in the anesthesiologist on duty. Since anesthesiologists regularly perform epidurals, my neurologist believed he might have better luck.
To my relief, the anesthesiologist completed the spinal tap in under five minutes—completely pain-free. Afterward, I had to lie in the hospital bed for an hour to allow the puncture to heal. If not, I risked developing a post-lumbar puncture headache due to spinal fluid leakage.
A Painful Setback
I left the hospital feeling fine, but the next day, I went swimming at my parents’ house. After coming inside, I slipped on the wet floor and fell flat on my back. Almost immediately, I developed a severe headache. Assuming it was from the fall, I took some medicine, but nothing helped. The only relief came when I lay down. Every time I tried to sit or stand, the pain became unbearable.
I called my neurologist, who suspected that I had reopened the lumbar puncture site, causing a spinal fluid leak. The solution? A blood patch. This involved drawing my own blood and using it to seal the leak where the spinal tap had been performed.
Meeting my neurologist at the hospital again, I underwent the procedure without complications. After lying still for another hour, I left the hospital—this time, headache-free.
The Official Diagnosis
On July 1, 2004, Jeremy and I met with the neurologist to receive my official diagnosis. I was diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS) and presented with treatment options. At that time, there were only three main medications available, all of which required injections. The primary difference between them was the frequency and location of the injections.
My doctor recommended Betaseron, an every-other-day injectable with intimidating side effects, including an increased risk of depression and suicidal thoughts. Additionally, the medication was not recommended for women planning to have children—and Jeremy and I definitely wanted kids.
After discussing it for a few minutes, we decided to forgo the medication. The potential side effects seemed worse than the symptoms I was currently experiencing. That marked the last time I saw the neurologist in Bloomington—and the beginning of my journey through denial.