Before I get into all of it, this is my own experience and not being on drugs might not be for you, but I hope I can inspire MS patients to think about why they are on a particular medication or not. Whether it be a DMD, other pharmaceuticals, diet, supplements or holistic therapies, we all must do our homework when considering the side effects – both sort term and long term. As so many of us with MS have seen, read & heard over and over again, MS is known as a “snowflake” disease. This nickname has been a long lasting descriptive. Just as no snowflake is identical to another, the same can be said about MS. Each of us are vastly different and the same applies as to how we may (or may not) react to the many choices of drugs or other treatments. The “snowflake” comparison should also mirror that.
I’ve had a pretty good ride living with MS. My first attack was in April 2010, where I got super bad vertigo just sitting but was dismissed by doctors. Then around Christmas 2010 my feet went numb, all the way up to my hips. Luckily I was diagnosed and treated with IV steroids within three weeks. After a few more months working 50% at my job, I was able to go on disability full time. This time gave me the opportunity to figure out who I was, what I needed and how to handle my MS. I live in Europe and luckily we have amazing health care and I was able to switch to the hospital that is considered the best in my country. I have a very stoic MS neurologist, Bob. He is an amazing doctor. Since my diagnosis I decided to create a Twitter and Facebook account under this pseudonym, so I could speak freely about my doubts and awkward things happening to my body. I keep my eye on most of the new studies and medication. Often I would suggest something experimental and he would err on the side of caution, mentioning it was never tested for MS patients and could end up being dangerous. I started off with two lesions and he suggested not going on meds.
Over the years I’ve made it a point to keep up with all the new medications and ask patients about their experiences. I have tried many, MANY different types of pills for nerve pain and to help my sleep disorder (non-REM parasomnia). Because just having issues with MS isn’t hard enough, right? So I know I’m extremely sensitive to medications and am prone to negative side effects. That combined with the fact that I’ve been very stable, Bob and I decided not to start on a DMD. Over the years, I have worked a few afternoons at an office and freelanced a little from home. Which gives me ample time to see a whole host of doctors/medical professionals who keep me going. I go to different physical therapists three times a week, twice to work out. I bike on the streets and on a hometrainer as well. Since April 2014, I have been an avid fan of Yoga with Adriene, https://www.youtube.com/user/yogawithadriene. I really believe moving this much and working out with physical therapists that really understand MS is the key to my staying stable. Besides that I’ve been going to therapy for almost seven years.
Fatigue and pain are my biggest issues and I take a 20-45 min nap every day and need quite a few hours at night. To round it out I try to eat healthy, but I love to indulge in yummy foods every once in a while. MS is hard enough, but to forgo cake/macaroons/cupcakes etc. would be awful. To round everything out, I was diagnosed with a very low level of vitamin D, so I take 5000 iu of vitamin D, a high dose B-12 to combat migraines, a multivitamin and my life saver, Turmeric (Curcumin). From September 2012 – summer 2013, it seemed as if I got sick with every “friggin” bacteria and virus out there. I spent 16 weeks out of 10 months sick in bed. It wasn’t until I started taking the turmeric did I seem to only get as sick (and as often) as my “healthy” friends. I try to balance my schedule with fun stuff (i.e.,reading, theater, ballet, museums, eating out) all while staying in contact with my doctors to make sure I don’t overdo it.
I hope this story has given some of you insight into my journey. I also hope to continue sharing more stories about my life with MS and would also love to hear about yours. Connect with me on twitter – https://twitter.com/lauramann212.