After a whirlwind three days in the hospital and attending the wedding of the century I was ready to sleep for a month! But once again my MS had other plans. Now that I had experienced my second relapse I was “officially” diagnosed with MS and it was time to choose a DMD. (Disease Modifying Drug) I was lucky to be diagnosed with MS at a time when researchers are constantly developing new treatments for patients, unlike twenty years ago when the were zero medications readily available. While I was informed right away by my neurologist that there was no cure for MS, she quickly suggested a list of medications that could slow down the disease. Sounds good, right? Well, sort of. The important thing to note is that they are called disease “modifying” drugs. Not disease stopping, pausing, halting, or dare I say…curing. No, that is NOT what you can expect when subjecting yourself to taking a DMD for your MS. The goal of any DMD is to SLOW the progression of your disease. That is absolutely a great goal. And for a lot of people these drugs work, at least for a long time. However, DMDs have two major pitfalls: 1. The cost. 2. The side effects.
Thanks to my (super secret at the time) wedding the month before, the cost would be mostly covered by my new insurance. The first couple of months would be expensive but once I met my out of pocket maximum, super insurance picks up the rest. I didn’t truly realize the value of this new insurance until I called to schedule delivery of the first month of my DMD and they told me the co-pay was $1,400.00! WTF?!?!?!?! That is more than my RENT! And so I dove head first into battling insurance to approve and pay for the medication I needed to slow down my disease.
When I left the hospital my neurologist gave me a list of twelve DMDs, circled four, and told me to go home and research them. I was scheduled for a follow up appointment with her in two weeks at which time I was supposed to tell her which one I chose to take and we would “get the paperwork started.” Well that sounded complicated! Just pick one?!?!?! How do I know which one will work for me? Which one is the right one? Why wasn’t SHE picking the medicine?? Isn’t SHE the doctor?? I had so many questions! She offered little guidance and told me simply, “it mostly comes down to which side effects you can tolerate the best.” Again, WTF?!?!?!?! (Note: One month later I fired this neurologist telling her, “I’m pretty sure I know more about MS than you and I’ve only been diagnosed two months.” Stay tuned for that!)
On my first day home from the hospital I spent hours in front of the computer reading the prescribing information for each of the four drugs. A few of the common side effects for all the drugs included – headache, nausea, diarrhea, dizziness, blurred vision, increase heart rate. While none of that sounded like tons of fun, any one (or even a couple) of those sounded better than a monthly stay in the hospital. But then I got to the bold print warnings that come with each drug. One warned of permanent liver damage, a few others warned of the risk of developing a fatal brain disease, another causes your hair to fall out. I can’t even tell you how many times I muttered WTF to myself while I was reading. It seemed completely illogical that the medicine I would take to help slow my MS progression might cause my body more harm in other areas. Or even kill me! WTF MS?!?!?
A week out of the hospital I had read everything I needed to know (and a lot of things I didn’t want to know) about my drug options and I had come to the conclusion they all sounded terrible! The only other factor that needed considering was the method of administration. This was eventually what made the decision for me. Of the four medications I was to choose from, three were injectables. That means I would have to inject myself everyday, or at least three times a week, for the rest of my life! I don’t have a fear of needles or anything but those drugs also came with their own “common side effect”; injection site reactions. Depending on the person, this could mean anything from a little redness and irritation to huge welts and divets in the skin after prolonged use. Not quite sure what “skin divets” were I took to my computer and after one Google Image search I quickly decided injectables were NOT for me. Yikes! (DON’T Google it!) That left me one option, the twice a day oral pill. Sounds easy enough. Oh, but it comes with the risk of that fatal brain disease I mentioned earlier. Despite the risks, given all the options, I felt like I was picking the lesser of four evils.
I didn’t want to take too long to choose a DMD because I knew that it was typically a battle getting the insurance companies to approve these medications. By the second week of June I had submitted everything my neurologist and insurance needed to get those pills delivered to my doorstep. There was nothing I could do now but wait and rest my body. And so I did, for a week or so. I was waiting and waiting but heard nothing about getting my medication. So began the first of many battles with my insurance. I had to call everyday for two weeks to get things sorted properly. At a time when I should have been putting zero stress on my body, I was having to spends hours on the phone trying to convince people to give me medication that I so desperately needed; AND to not charge me a million dollars for it either!
Stress is the most common trigger for MS symptoms. Heat is also a terrible thing for MS. Following my second hospital stay I decided it would probably be smart to take some time off of work if I was going to make it down the aisle at my wedding in August. I was battling my insurance for a DMD, I was still recovering from the new lesion my relapse left in my brain, and it was the dead of summer in Chicago. It took everything I had most days to get out of bed and run a few errands, let alone commute downtown and represent people in court. I figured cutting out work would give my body the time it needed to recover. Plus, once I got my medication in order and a DMD into my body, my MS would hopefully quiet down. The steroid treatments I got in the hospital had put a band-aid on it, but the DMD would quiet it long term. Then all would be back on track. Right?!?! Of course not! I had MANY more MS lessons to learn.
I realized rathered quickly in my diagnosis that sometimes with MS there is no good option. Sometimes it comes down to picking the lesser of two evils, or four in my case. Just don’t dwell on the negative. There is a positive in every situation if you are willing to look hard enough. While I was ecstatic not to have to inject myself with a needle everyday, for the first couple weeks whenever I would get a headache the thought of “oh shit, is that the fatal brain disease?!?!?!” would briefly cross my mind! But I never allowed myself to stay in those thoughts for too long. If I did I would be living a miserable life. Every medication came with a handful of risks but my MS had made it clear that the biggest risk was leaving it untreated!
Some people with MS choose not to take DMDs, some people can manage their MS without them, some people treat their MS 100% naturally. To each their own in my opinion! Choosing a treatment course is like MS; it’ is different for everyone. And to make things even more exciting, most Warriors have had to try more than one DMD in the lifetime; some have tried them all! What works for one person might not work for another. And a drug that works for you now may not work for you one year from now. Never a dull moment with this disease. What’s next MS?!?!