The following writings are my experiences with the multiple sclerosis medications that were available in 2001 and 2002. These words may disappoint or anger some people, but as they say, the truth shall set you free. This blog is my story loaded with the facts I attained from many months of research. I got this information primarily from both the drug manufacturers and FDA alike. However, I am required to say these are my opinions based on all of the facts I gathered.
My primary care doctor told me that my diagnosis was multiple sclerosis on a brisk October day. I am not sure why the neurologist did not give me the startling diagnosis because he set up tests and read the results. Instead, it fell to my primary care doctor to dispense the bad news because he had an established relationship with me. After he felt this information soaked in, Doctor Cook shared that my neurologist would give me the big picture and all the pertinent details.
The next few days were a blur, as the idea of being sick caused constant confusion because I did not feel ill. The slurred speech issue that began my quest for answers had disappeared several months before. I was heavy weight lifting three days a week, and my friend Mike had just started training me to run my very first 26.219-mile marathon. I also held down a full-time job that I enjoyed, so everything seemed to be coming up roses.
A week later, I had an appointment with my neurologist Doctor Mann, to discuss my multiple sclerosis. The doctor told me that I should stop taking the many vitamins and end or significantly reduce my weightlifting regimen. I kept taking the vitamins as I could not waste them, and I was trying to break a weightlifting plateau, so I would not stop. I decided against medical advice to not stop or alter my current fitness regimen at all. I did not understand how any doctor would suggest doing no or less physical activity as they usually recommend more. Most doctors have told me they know little about vitamins, so I was confused at his suggestion about that as well.
I was intimidated by doctors and did not ask the plethora of questions that a diagnosis of this magnitude mandated. I also did not know how to search the internet correctly for needed information, so my findings were typically slow. I had even gone to a dinner for the newly diagnosed sponsored by one Drug Company and heard a lot but remembered very little. Everything was moving so fast that I was overwhelmed and was swimming in a sea of medical terminology and doctor jargon.
Doctor Mann started me on the MS medication Avonex, a once per week intermuscular injection. We discussed all of the MS medications available, and he told me Avonex was my best choice. That day, I learned all the MS medications were shots, and I feared needles causing me great trepidation. The doctor explained that I would receive a phone call later in the week to set up delivery as there was a lot involved in this transaction. A nurse would also be coming out to give instructions about everything concerned with this torturous treatment.
Over the next year, my multiple sclerosis had progressed enough to cause concern. I deteriorated on Avonex even though he said it would significantly slow any progression of my MS. I had dropped my diagnosing doctor and replaced him with my new neurologist doctor Carrol. Sadly he left me on Avonex, which disturbed me as my body breakdown continued to prove this medication’s superfluous nature. As my physical decline continued, my new neurologist repeatedly said we should take the wait and see approach. I was deeply discouraged because if I was getting worse, what was the point of the stupid needles and the medication? I also wondered what the purpose of the wait and see approach was; what on earth were we waiting for?
I waited six months to consent to the doctor’s first time, saying the words wait and see approach. After the six months of degradation, I began my research, learning what I could about the MS medications. I was puzzled when I read in 2001 how the MS meds all had success rates that were well below fifty percent. In other words, I would do better flipping a coin to treat my multiple sclerosis. I then learned that the pharmaceutical companies make the rules about what passes and fails during the clinical trials. This disturbing information made me question everything about the intentions of big pharma.
With education this was getting real.