It wasn’t always a battle. I remember at 40 I was still walking pretty good. I’d have a limp every now and then, when my legs were tired, but an outsider would never know. I’d have occasional bathroom accidents that I used to hide, but back then it was easier. Most of my symptoms were invisible. My balance was never great and I wasn’t running any marathons. Hell, I wasn’t walking any marathons either but I was nothing like I am now. That was only six years ago, and so much has changed.
Back then, I felt my condition was worsening. Things were weaker each doctors visit then they were the last one, numbness and tingling was stronger and in different places and I felt like I was “bleeding through” my current medication. My spasms and spasticity were in full swing. .I was also suffering at the same time from migraines that would last 5 to 6 days a week. My doctor decided to switch me from Gilenya to something else. I saw city specialist at this time and I was even looking into one of the clinical trials. I had to be off all disease modifying medicine for at least a month. As a group, my family, my doctor and my new MS specialist decided to put me onto Tysabri, never realizing it would take us a couple of months to get it started.
I stopped taking medicine in the middle of August and by the end of September, early October, the numbness in the tingling in my hands started to make my hands not function correctly. At exactly the same time, I started a new migraine medicine that also caused numbness in tingling in the extremities. When I told my doctor about it, he really believed it was the migraine medicine. When it didn’t get better even when I stopped the migraine medicine, he put me on steroids. This would mark the first time in 16 years steroids did nothing for me. It was repeat it again a couple weeks later, again doing nothing for me. By this time I was in a full-blown MS relapse that put me where I am today.
This was back in 2014. It was this attack that disabled me. It was this attack that causes the battles I deal with everyday. It’s this attack that continues to get worse due to the secondary progressive form of the disease. I believe my “bleeding through” was secondary progressive MS. I was bleeding through my current medication because I was both relapsing remitting MS and secondary progressive MS. I’ve learned now that no medicine could hold me because there’s no medicine for secondary progressive. However, I still need that medicine for relapsing remitting because I am both. That was the mistake we all made way back when. I think we were all in agreement that I was going into secondary progressive not realizing I was still having attacks. I don’t blame my doctor, I don’t blame my family, I don’t blame myself, I don’t blame anybody. It is just how my disease path went. I can’t see where I’d be today if that attacked in 2014 didn’t happen because it did. I’m not going to speculate who I’d be today if that didn’t happen. I’m so grateful for everything I have today, where I am and the support I have I don’t see the point. This is my situation and I deal with it the best way I can.