After Diagnosis

What do you do? What happens next? My primary care doctor was on vacation so the doctor covering for her referred me out to a couple of neurologists who specialized in MS. One of them being a very renowned MS doctor right here in Milwaukee. I was having trouble connecting with the neurologist’s office that was a little closer to home and their staff wasn’t very friendly so they were crossed off my list. I chose the world renowned doctor by default. Even though I did not care for him I am thankful for the experience because I learned tons about being an informed and active patient.

My first MS visit was with him and his PA. It was a pretty straight forward appointment. Yes, you definitely have MS. The treatment was going to be a week of IV steroids and then we talked about the medicine I would need to take. Tysabri they said was my choice. I was not given other options and I was told that is what I was going to be on. It is a once a month IV infusion that you get at the doctor’s office. The results are very good, except for the part about possibly dying from it. I was told that only happens to people who have the JC virus and if I did test positive for it they would pull me off of it before it would be come an issue, somewhere around a year or so of use. I have an incredible fear of dying so that was enough to start me asking questions and researching. I also wanted to know how much it was going to cost, but I could not get an answer from their insurance coordinator. I did not want to sign up for something that was going to possibly kill me and/or possibly bankrupt me. I went through with the steroid treatment, which for me is as pleasant as a MRI. I made follow up appointments with the doctor to find out why he was pushing Tysabri on me. When the nurses would take me back to do my vitals we would talk about what I was seeing him for. I told them that I had questions about why he wanted me on Tysabri and the next question always was what medication was I currently on, which was none. It then got very uncomfortable and the nurses would look puzzled. You see Tysabri isn’t typically given to a newly diagnosed patient, it is usually given to those who have been on other meds that have not worked for them. After my third follow up appointment, with my mom and husband, my mom asked me if I felt like I had my questions answered, which I didn’t. To me the answer was pretty clear, find a different neurologist. Plus, when the doctor would pass me in the hall it was like he had no clue who I was. You want a doctor who knows you and your history, at least I do. I wanted to be more than a MRI and test results to my doctor. I found out later that he had over 3,000 patients a year, yikes, no wonder he didn’t remember me.

I contacted the MS Society for referrals and they provided me with quite the list. I wanted to go to the next go to doctors in Wisconsin but I would have been waiting months. I made an appointment to see my current neurologist, who always says he isn’t a MS expert, he only happens to have many MS patients. I always say to him is anyone every really an expert with such an unpredictable disease? It was more like a job interview for him at that first appointment. When he said, “I see nothing in your file that would lead me to put you on Tysabri” I knew I had a winner. Plus, he talked with me not at me and he has never told me what I was going to do. He said that he would like to start me on a more tried and true treatment. He gave me all of the details and his opinion of which ones would be best but the final decision was left up to me. I chose Rebif, it was a subq shot taken 3 times a week. We ordered the kit and when it came in my husband and I went in to learn how to inject it. We watched the video and then it was my turn to try to inject the medicine. It was going into my thigh, I sat poised with it for a long time and tried to do it. I just couldn’t, I nicked my skin so it bled a little and I started to cry. I am a tough chick, I don’t cry and if I do whoever or whatever made me cry is in trouble. The nurse had to inject me that first time.

Soon, I was a pro shot giver and taker. It burned like hell and left dark spots at the injection sites. Those problems were minor compared to the horrid flu like symptoms, that never really went away. I got in the habit of taking Advil PM and taking the shot at night right before bed. That helped a bit. Other than that I was healing and feeling better. Good enough that I started Crossfit last fall and running. Then in Spring 2013 my world was crashing down again. I had a follow up MRI that I kept putting off because I felt so good. The MRI showed new lesions, yet I had no other symptoms. It was back in for more steroids, yay! Then we had a follow up MRI in July 2013, those lesions went away but 2 more popped up. I still felt fine but my neurologist thought we could get better results with new medicine. The neurologist and I decided on Copaxone.  The MRI is only a snapshot of your brain at the moment in time, I wonder if I had an MRI everyday for a week would they all look the same?

I will see the neurologist on January 21, 2014 so I won’t have further detail until then.  Currently, I am still running/Crossfitting and I still feel great.

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