The neurologist who first diagnosed me with MS had a horrible bed side manner and did not fill me with confidence about my ability to fight MS head on. That is one of the many reasons I didn’t see a neurologist for 7 years after my diagnosis. When my symptoms became impossible to ignore and it was time to find a neurologist again, I didn’t know where to turn. My brother and his girlfriend were living in Chicago at the time. They wanted to help in any way they could. She had an “in” with one of the best MS doctors around Chicago and they pulled some strings to get me an appointment. Chicago is a 4 hour drive one way from where we lived at that time, but I was willing to make that sacrifice to see one of the best!
My appointment was in the middle of the day, so Jeremy and I decided we would drive up and back the same day. The drive there was one of the longest drives I have ever known. There were so many thoughts going through my head about what would happen when we saw this doctor. She was the best, so I think I expected miracles. During the appointment, she examined my eyes (ok), my reflexes (hyper-reflexive), my balance (poor) and my hand-eye coordination (good). Then she reviewed my MRI scans and spinal tap reports from the previous doctor. Since we were from Indiana, she was not going to require me to have another MRI. She gave me orders for physical therapy, prescribed Betaseron, set up another appointment in 4 months and sent us on our way.
As soon as we walked out of the office, the waterworks began. We had made an 8 hour round trip drive for that?!? It was no different than what had taken place with the first doctor in Bloomington. I couldn’t believe that this was our future. I had done a really good job of living in denial, but now I really had to process my diagnosis. I literally cried the entire 4-hour trip home. It was like being diagnosed all over again, but this time I couldn’t ignore it. I would have to contact a Betaseron nurse to come to our home and teach Jeremy and I how to administer the injection every other day. I would also have to begin physical therapy to work on balance, leg strength and walking. MS was slowly taking over our life-or so it felt.
I was VERY nervous about starting Betaseron. I’m not scared of needles so the fact that it is a shot was just a slight inconvenience. I was more worried about the possible side effects. Most patients have flu-like symptoms such as headache, tiredness, fever, chills, and muscle aches when they start Betaseron. Symptoms usually last about 1 day after the injection with Betaseron and improve or go away after a few months of continued use. I wasn’t sure how I was going to work, take care of my boys and live a normal life if I was sick every other day.
Jeremy’s parents took the boys to a playground for a few hours when the nurse came to our house to show us how to administer my medicine. The process was actually pretty simple. The syringes would be delivered to our house pre-filled. All we had to do was mix the medicine, put the syringe in an auto injector, set it against my skin, push a button, wait 5 seconds for the syringe to empty the medicine into my body and pull straight up. I would never have to see the needle enter my body. Injection sites are lower abdomen, upper thighs and back of arms, but must be rotated to prevent necrosis of the skin. After my initial injection, we waited an hour to see if I would have any side effects. I was one of the lucky ones-I did not get flu like symptoms. After a few months I realized that injection site redness and bruises would be my main side effect.
I was scheduled to see the neurologist in Chicago 4 months later to see how everything was going with the medicine. The appointment took 15 minutes and she basically told me to stick with the medicine and she would see me again in 6 months. I decided then that driving to Chicago was not going to work every 6 months for a 15 minute appointment. I began my search for a neurologist in Indiana. I did lots of research on the internet looking for the best at treating MS and 1 name kept coming up- Dr. David Mattson. I switched immediately.
Dr. Mattson is well known in the MS world. He directs the IU MS Center, which is a member of the Consortium of MS Centers. I have actually had people recommend him to me multiple times since I’ve been a patient of his. He is very kind and knowledgeable. My first appointment with him mirrored my first appointment with the neurologist in Chicago. I was to continue with Betaseron and come back every 6 months. With Dr. Mattson it would be about 8 months because he was usually overbooked…he IS the best after all and has helped many people.
Jeremy came with me to the last appointment I would have with Dr. Mattson this year because I needed assistance getting in and out with my wheelchair. During the appointment, Jeremy asked Dr. Mattson what we could do about my inability to walk-I was too young to be wheelchair bound and physical therapy wasn’t working. Dr. Mattson shrugged his shoulders, “That’s just the nature of the disease.” I was livid when we walked out the door. I didn’t believe that this was my destiny. Hearing him say that lit a fire under me to change the course of my disease on my own.
I learned the hard way that the best doctors were the best because they knew the most about the disease and how it effects people. This didn’t mean they would have different/better solutions to the disease. They were limited in their ability to think outside the box or look into alternative therapies.
I was going to have to find my own miracle…