Uncharted Territory; “He Sounds Like a Trailblazer”

The other week I had to stop by my neurologist’s office to drop off some paperwork and pick up my MRI on a CD. While I was waiting for something I decided to walk down the hall and visit the nurses who took care of my Lemtrada (Alemtuzumab) infusion last September (2015), I just wanted to say hi and let them know how I have been doing. They work in the infusion center which is full of mostly cancer patients and people with multiple sclerosis so while I was talking to them I basically had a room full of people listening in to escape the boredom of their infusion. The lady nearest us chimed in and said, “wow, he sounds like a trailblazer” which I sort of chuckled to.

The thing is, I do not consider myself to be blazing any trails in the world of MS. Sure, I was the first person in California north of San Diego (or so I was told) to receive this treatment but I did not do it because I wanted to help the treatment of MS evolve, no, I did it because I had run out of options and I just can’t give up until I have tried every possible solution no matter how unlikely it may be to help. Not as heroic sounding but I am just being honest. For me, Lemtrada was the last treatment available to me approved by the FDA for treating multiple sclerosis so I really had no choice. Before I did Lemtrada people would say, “Lemtrada, sounds scary, that is a tough decision (whether to try it or not) to make” and my reply would be, “it’s not really a decision, I kind of have no choice if I want to improve my life, it’s just a matter of accepting that decision”.

Now, though I didn’t go along with this choice with the intent of “blazing some trail” nor do I consider myself to be someone who helped “lead the way” for others with MS, I do understand what people actually mean by this. I was entering uncharted territory. We all had an idea of what to expect if everything went well but what was not fully known was the best way to get to the finish line. Let me explain; I had joined a group on Facebook full of people who had done Lemtrada, who were doing it, and who were thinking of doing it. No two people’s doctors had the same protocol for Lemtrada, meaning, what pre-meds to give, how much of those premeds, what medications to take at home, when exactly to start taking them prior to Lemtrada and how long to take them afterwards. That sort of stuff. Everyone seemed to have a similar idea of what to do and how to do it but nothing was exactly the same, it was too new. Some people might start a medication 2 weeks before Lemtrada and some might start it 4 weeks before, that sort of thing. In this group, a lot of us could see what seemed to work better by comparing how we all did it and comparing what (if any) side effects we had. Patterns. So in a sense, it was kind of scary because nobody knew with certainty what to expect. Things would happen during my infusion that raised enough concern for us to stop for a while and later, after I had finished my 5 days, they found out, “oh, that is normal, we didn’t have to stop” which is great for the next patient but at the time that unknown was a bit alarming to us.

I am glad to have helped a very small corner of the MS community learn about this treatment even if I was just a guinea pig but again, my own motives were simply about “self-preservation”, an evolutionary trait of all life; survive. As long as I am not feeling the way I want to feel I will gladly try something new because to me, most the time, the possible benefits outweigh the possible risks. Until new medications that can repair (remyelinate) old damage are available I will be trying different alternative treatments and looking into things that are not FDA approved for treating MS. It can feel odd, maybe even scary, exploring uncharted territory when it comes to your health but as I said before, I will do whatever it takes to get better. Before I was diagnosed with MS, when I was much younger, I enjoyed hiking and exploring areas no one had really ever been. It was exciting, the possibility of finding something new! I think that mentality simply crossed over to my life with MS. So if you want to call me a “trailblazer” for that then fine but in my eyes? I am just looking for a solution to the problem that is my MS, something “new”.

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