Aftermath: So there I was, sitting on the flipside of having pushed (let’s be real “forced”) my way through to finding answers. As I said before, the best and worst part of knowing, is knowing. The relief of having the question “what’s wrong with me?” answered is immediately overtaken by countless, literally endless, follow up questions. I won’t bore everyone with a list of questions, however, the overall theme revolves around figuring out how this disease will impact me personally, professionally, economically, and so on.
Disease progression is the question above all others. This disease is different for every single person that has it, in fact, one of the most honest things I’ve heard so far from a medical professional is “we don’t know how to tell if the medicine is working”; meaning that there is no way to test my body simultaneously on the medication and off the medication. They can only go by available data and matching me up with a treatment plan that consistently works for other people at this stage. I have Relapsing Remitting MS, which is the most common form and from what I gather, save some unforeseen miracle, it is likely that it will evolve into Secondary Progressive MS.
I remember the first time I found out about “female” ultrasounds, I had given birth to two kids and somehow no other woman in my life had ever mentioned having one! I am no prude, but I was appalled that this little tidbit of what I consider important information had never been shared amongst my female friends! I literally yelled at the technician (after she snapped a condom into the “wand”) “you want ME to put that WHERE?”. Well that experience my friends is nothing compared to the aftermath of a diagnosis. Before medication started, I had to do another round of tests. I call it “Frankenstein testing” because that’s exactly what it is. They plunge sharp metal probes into your arms, legs, hands, and feet before sending electric shockwaves through your nerves to gauge how your body reacts. Then they place headphones over your ears and play loud static-like noises for five minutes in each ear. You stare at a computer screen for twenty minutes while staring at black and white flashing and swirling squares and circles on the screen. And finally, they poke your hands, fingers, feet, and toes with needles to test your level of numbness. This is a real thing people, no joke, insurance even pays for it!
There are only 13 or 14 medications approved for the treatment of MS in the United States. All of them are extremely expensive (more on that later). The spectrum of disease modifying treatment ranges from monthly infusions (into the base of the neck), to daily injections, and finally, oral medication. I started on an injection, it was horrible and I had a relapse three months in. I had huge welts at my injection site, they were hot, itchy, painful, and lasted for 5-7 days. I tried every topical agent you can think of from cortisone, to Apple cider vinegar, to hemroid cream, yes I said hemroid cream. I was completely exhausted, my throat felt closed all the time, I was dehydrated despite drinking over a gallon of water every day (I even kept 2 water bottles by my bed at night, they were empty by morning), I woke up every single night with the worst leg cramps, I described the overall feeling by saying that it felt like I slept in the dryer. I couldn’t think straight, I didn’t want to go anywhere besides bed, and I dreaded going to work (I love my job, it’s crazy, but I seriously love it). I quit the injections after 6 months, I went to my neurologist 6 weeks later and explained, very methodically, why I stopped. She insisted I go back on it and suggested that my claim of feeling better since stopping the med was “in my head”. Then, when I explained my extreme fatigue, she said two things that bothered me 1) I can give you medication for your symptoms, 2) maybe you should work part-time. I was mortified, I’m not against taking meds, but how many would I need to cover up all of my symptoms!?! Secondly, I am only 41, I still have career goals, I’m not “done” yet! I explained that I am a smart woman, I understand that all medications have side effects, and with the available MS treatments, some of those side effects are not going to be pretty, but I don’t think I’m asking too much to expect a tolerable quality of life while on such a long term (literally lifetime) treatment.
That’s when I decided to get a second opinion. Two days before Christmas 2015, I went to the ER at the University of Michigan. It was the best thing that has happened to me so far. I was immediately seen by a neurology team and they LISTENED to me! I was going through my whole speech about how I really like my current neurologist, but we just don’t agree on a treatment plan, the resident stopped me and said “there are plenty of options, we will find the one that is best for you”. It floored me because my current neuro was so dead set against trying anything else that I was starting to question my intuition. I guess this is one of those times when being a stubborn bitch worked in my favor.
I will end this with a current status like I did last time. I am working my way through the red tape of getting insurance approval for my new medications. This will take a few weeks based on my last experience, when something costs $6500 a month, the insurance company likes to play the denial game, the flip side of that is when pharmaceutical companies get $6500 a month from you, they’re more than happy to help with the red tape!
Again, this is my story, just mine. It is not intended to be a resource for advice, but a way for me to express my feelings without bombarding the Facebook feeds of family, friends, and colleagues.
Talk to you soon!