After my first appointment with a neurologist in Bloomington, I learned that in order to get an official MS diagnosis I would first need an MRI to check for lesions on my brain and spinal cord. A lesion is where the nerve has been damaged by the body’s own immune system. They prevent signals from getting to the body from the brain. MS is an auto-immune disease where the body attacks the brain and spinal cord leaving behind scars, or lesions. The MRI was uneventful and did reveal lesions on my spine, but that is not enough for a definitive MS diagnosis. I would also need a lumbar puncture (spinal tap). This test checks the fluid that runs through your spinal column. Doctors use it to look for high levels of proteins and other substances that are signs of the disease.
My neurologist met me at the hospital on the day of the spinal tap. I was nervous about having a needle placed in my back for any reason and this was not a small needle! He assured me that he had done this before and it would not be a big deal. He had me under X-ray so he could see where the needle was going once inside my back. I laid on my side and curled up to give him better access to my spine. He stuck the needle in and I’m not going to sugarcoat things-IT HURT!! He continued to move the needle around in search of the sweet spot. After a few seconds, I couldn’t handle it anymore so he removed the needle to give me a breather. Then, it was time to try again. The second try was not any better. I was not keen on giving him a third chance, so we decided he would get the anesthesiologist on-call that day. My neurologist explained that since the anesthesiologist is used to giving epidurals, he might have better luck. I was skeptical, but what choice did I have?
The anesthesiologist showed up and within 5 minutes had completed the spinal tap with zero pain. I was required to lay in the hospital bed for an hour after the procedure in order to let the puncture heal. If not, I was informed it was possible to get a post lumbar puncture headache due to a leak of fluid into nearby tissues. I didn’t leave the hospital with a lumbar puncture headache. The day after my spinal tap I was feeling good so I went swimming at my parents’. When I came in from the pool, I slipped on the wet floor and fell flat on my back. When I stood up, I instantly had a SEVERE headache. I assumed it was from the fall. I went home and took some medicine, to no avail. The only time the headache would subside was when I would lay down. Every time I tried to stand/sit up I would get an unbearable headache. I called the neurologist. I had probably reopened the lumbar puncture. He said I would need a blood patch where the spinal tap had been performed to stop the spinal fluid from leaking. They would draw my blood and use it to patch the leak. I met him at the hospital and he applied the patch with no complications. I had to lie still for another hour and left the hospital headache free.
On July 1st, 2004, Jeremy and I met with the neurologist to find out my fate. I was given the official diagnosis of Relapsing-Remitting Multiple Sclerosis (RRMS) and my options for treatment. There were three main drugs for treating MS at that time. All 3 were injectables. The only difference between them is location of injection and the frequency. My doctor recommended Betaseron. It is an every other day injectable that has some pretty intimidating side effects-increased thoughts and risk of suicide are pretty high on the list. They also do not want you on the medicine if you plan on having children and we definitely did. After talking it over a few minutes, Jeremy and I decided that the medicine sounded worse than what I was dealing with physically at the time. We would pass. That was the last time I would see the neurologist in Bloomington and denial set in.