When I was diagnosed with MS last April, I was given three treatment options: A daily injection, a pregnancy-category-X drug, and a monthly infusion.
The idea of a daily injection didn’t really turn me on (it would be a daily reminder of MS; I have a diabetic dog I have to shoot up with insulin twice a day; it would leave dimples in my thigh, etc.). We were still in the hot debate of having another child so the pregnancy-category-X drug was also a no-go. A monthly infusion? Not a bad plan except that I am JC positive.
While the idea of constant monitoring was off-putting, I went for the monthly infusions regardless of what my heart told me. I wore lavender-infused body oil during the treatments in an effort to calm my nerves. Was my brain turning into PML mush? Hoping for the amazing response many others have, it never happened for me. In fact, I was more symptomatic and tired than I had ever been before. With the encouragement of my doctor, I kept going, even when I knew the treatment was wrong for me. I was so disappointed that it wasn’t a magic potion. I couldn’t get over how bad I felt, and I was frightened that I would never find something to make me feel better. I decided if modern medicine was not going to work, I would go back to basics.
So I started taking a million vitamins and went the organic-everything route. And while I didn’t quite go to extremes and become a vegan or anything, I made better food choices. I converted my household to mainly organic and “natural” products (including cleaning supplies and diapers, etc.). I was taking about 20 vitamins or more per day. I imagined myself feeling better. I thought my cognitive issues were improving and believed I had more energy. But the only real difference was that my pee was sun-glow yellow and smelled a little funny. While I still believe in changing your diet for the better, I am not sure my liver was served well by my very expensive vitamin habit.
So here I am, not on anything, which is not smart, but I’m figuring out what’s right for me. I was never much of a pill taker. I suffered from migraines and PCOS as a young adult; if the pain was intolerable I would take something, but the idea of medicine for maintenance was not for me. While my doctors warn me to “get on something,” I feel now that the “mistakes” I have made so far in treating my MS are what I needed to do in order to make an educated decision about what is best for me.
Here’s my advice for anyone who is in the process of determining the best treatment path for their MS:
- Be comfortable: Do not take anything that you feel in your gut is not right for you.
- Ask a million questions: It’s your body. Side effects are serious — and having projectile vomiting or pooping problems WILL affect your daily life.
- Beware of online research: Do not google yourself into a tizzy! (That’s sound advice! Even my neuro told me you could google just about anything and find the answer you are looking for.)
- Reevaluate: Keep track of how you feel before, during, and after treatments. Talk to your doctor about how you’re feeling, and consider complementary therapies. Just trust your gut and make changes as necessary.
- Ask around: There is a large, welcoming community of MSers out there who are happy to listen and have lots of advice to offer. Ask and you shall receive.
How did you determine the right treatment path for your MS? Do you have any tips to share?
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