MS is called a "snowflake" disease. That means that no two people with MS have the exact same experience, or difficulty. This is part of what makes MS such a hard disease to diagnose.
This section of my blog will be a place for me to share my experiences of living with MS. While everyone with MS will have different struggles, I hope this page will help someone else with their own challenges. In 2003, only days after my 21st birthday, I received my diagnosis. It seems strange looking back on it now because at the time I didn’t feel like anything had changed.
My first symptoms included weakness and lack of muscle response on my left side. I had no idea what was going on. When I told my mom she said I needed to go to the hospital. After several weeks many doctors and a lot of tests later I was given the diagnosis of Relapsing Remitting Multiple Sclerosis. My doctor recommended Copaxone which is a once a day injection (think a diabetic who has to take insulin shots). What I didn’t really understand at the time was that Copaxone only has a 30% efficacy rate. I now understand that most drugs approved to treat MS have a very low efficacy rate. MS is a difficult disease to diagnosis, let alone treat.
I continued on Copaxone for the next several years until I had a severe relapse in 2010. By this time I had moved from Northern California to South Western Colorado and had changed doctors 3 times. When I had arrived in Colorado I had transferred all my files to the local neurologist. I saw her for a few years, but decided she wasn’t the right doctor for me. So I transferred my files again to the Rocky Mountain MS center in Aurora, Colorado, just east of Denver. My new Doctor changed my treatment immediately from Copaxone to Tysabri. I responded well to Tysabri and most of my symptoms abated. I liked Tysabri because it was a once a month infusion vs a once a day injection. Tysabri also has a 70% efficacy rate. I would have stayed on Tysabri indefinitely if I could have, but in 2014 my MRI showed new lesions so my doctor recommended Retuxin.
Rituxan, aka Rituximab, is currently approved for treating Rheumatoid arthritis and non-Hodgkin’s lymphoma, but not MS. That meant that while my doctor tried to get approval, my insurance denied coverage of this drug for me. Fortunately the drug company has an assistance program the covers the cost of the drug. And while they denied covering the drug, the insurance did pay for the infusion costs at the hospital.
As of the writing of this post, I have been on Rituxan for almost 3 years and have had more than 6 infusions (it is a once every 6 months treatment). So far I don’t think I am getting worse, which is a small victory, but I don’t think I’m improving either. My current symptoms include severe fatigue, weakness in my left leg/trouble walking especially for long distances, numbness/tingling in my hands, low energy, and dizziness/vertigo.
I also feel a great deal of frustration over the amount of things I can’t seem to do any more. From simple things like walking over an uneven surface without fear of tripping, to bigger things like hiking 5 miles, or being able to clean the whole house in 2 days. MS has changed a lot of things in my life. I try to take it one day at a time, which is all anyone can really do.
If you have MS, or know someone who does, please feel free to reach out to me directly. I believe together we can make a difference for others living with MS.