In 2011, after 30 years of being pretty sure I had multiple sclerosis, I finally found a doctor. My sensible cousin from Wisconsin congratulated me, telling me that the trick to managing a chronic disease was to find a doctor you felt you could trust, and then allow yourself to “believe in his magic and the majesty of his practice.” Seriously.
I could regret not having turned to real medicine sooner, but when I had my first attack in 1981, there wasn’t much to do for someone with MS. Diagnosis was subjective. I remember I asked one doctor, “Well, it’s not like it’s MS or something, right?” He shot up out of his chair and yelled, “I can’t say that. You have to go home, get better, and then have another attack. Then we’ll know.” And he fled the room.
So I went on my way to college in Boulder. I peed my pants in broad daylight while walking across campus with my sister. We just rolled with it, laughing and hurrying to her dorm room so I could change my clothes. My mother stayed with me for a week once when my legs went numb and I had to crab walk to get around my apartment. I wore a patch over one eye so I could keep my promise to drive the forensics team to a meet in Utah, despite my double vision. When a chiropractor suggested Valium to help with muscle spasms, my roommate’s father directed me to The Dr. Swank MS Diet, grousing that I was “too young a woman to be taking Valium.” My sister paid for my visit to a macrobiotic nutritionist and had a coworker visit me to perform Reiki. Over the years I’ve drunk a lot of wheat grass, swallowed hydrogen peroxide, and roasted and eaten yards of seaweed. The more careful I was with diet and exercise, the better I felt. I thought I had my MS under control as much as anyone could.
The diet/vitamin/exercise regimen worked well for about 20 years. I went to Taiwan for a year, moved to New York, ran the marathon a couple of times, and lived a pretty normal life. Although without my realizing it, my life came to arrange itself around my MS. I stopped working outside of the house, and started my own business as a legal headhunter. It was at this point that I started going without health insurance. Then, in 2010, with the help of AP-4 and a daily afternoon Red Bull, I took an office position with the US Census. After the Census, I managed to get signed up for Medicaid, the result of New York State signing up as many people as possible, a precursor to ObamaCare. The fact that insurance companies could no longer discriminate against customers and patients with preexisting conditions encouraged me to find a doctor to do an MRI and finally confirm whether or not I had MS. My boyfriend paid for my doctor’s visit, but Medicaid paid for the MRIs — and later for the hilariously expensive Tysabri infusions my doctor prescribed for me.
The first exam and oral history all but conclusively showed that I had MS; my first MRI confirmed it. I sat right next to my doctor, who “didn’t want to be cruel, but had to read me the riot act for going without treatment for so long.” At the same time, he didn’t want me to feel bad about something I could not change. I needed no further convincing and was ready to sign up for Tysabri, even with the threat of PML. When I tested negative for the JC virus, without which it’s practically impossible to get PML, I started the infusions.
My first year on Tysabri was a huge success. I felt so much better. I made less word salad during conversations. My walking was better, a little more normal. I no longer finished every day with the vague feeling that I could just cry myself to sleep. I’ve realized that 30 years of self-treatment has gotten me on Social Security disability, and that the only relief from MS as it starts to present in earnest has come from Tysabri and Ampyra. I take two Ampyra daily, one on waking and one before bed. I tried taking just one in the morning, even though two each day is the recommended dose. After trying it my way the first time, I now take it as directed because I seem to get better results.
So I no longer take the LDN and AP-4 from a compounding pharmacy my Internet research told me might make me feel better. I just finished my 27th and last dose of Tysabri. Now I’m taking Copaxone to protect my brain from MS during the Tysabri washout period required to prepare me for the Lemtrada I hope to go on when it’s approved at the end of 2013. This drug offers the hope for a permanent remission from MS, maybe even a reduction in the disability I have already accrued.
But the change from a suspicious, almost combative patient to one who’s willing to accept evidence-based medicine did not occur overnight. For a long time I continued to question the need for every MRI and every dose of medicine my newfound doctor prescribed. But I eventually accepted that my doctor and his team were trained and qualified to manage my disease better than I ever could, if I would just let them.
I can’t run anymore, but I practice enough Bikram yoga that I still don’t take any antispasmodics like Baclofen or Valium, except for the ones I now take for the trips into the MRI machine. My cousin says I look amazing for someone who has had MS for 30 years.
This article was written by Regina A. Schroeder.ampyra, copaxone, health insurance, jc virus, lemtrada, medicaid, mri, MS, ms drugs, ms treatments, multiple sclerosis, obamacare, pml, social security disability, ssd, swank diet, tysabri