Wednesday, January 25, 2012

I know the feeling.

My friend Jenny had just dropped me off. We had been out with our friends, doing who knows what. Something probably not that exciting. My memory fails me most of the time, but I remember walking into my parents house that night. I had stubbed my right toe on the door frame. Instantly my entire right foot started to tingle. It felt as if it were asleep. And it didn't stop for at least a month. Not only did it continue, but it traveled as well. My fingers on my left hand had began to tingle. Day by day it traveled, it expanded to my waist and wrapped around it, like a hug. Not a hug I wanted.

That week I found myself in the ER several times. My mom by my side, I was poked and prodded. The first visit I was told that I had a migraine, without a migraine. What does that even mean? My extremities were asleep and that was there explanation? Finally the 3rd time that week in the ER, after my mom crying and begging them, the doctor set me up with an appointment to see a neurologist. The doctors had mentioned Multiple Sclerosis in my visits that week and I knew that was why my mom had been so persistent that I see a specialist.

I had an MRI and a spinal tap. The MRI wasn't a big deal at all. The spinal tap however, was a pain in the butt! Actually a pain in the head. I had a really bad spinal headache from the fluid they took from my spinal cord. I had to lay flat on my back for days, and eventually had to go to a pain clinic to get a blood patch. A blood patch is when they take blood from your arm and put it into your spinal cord to make up for the loss of spinal fluid that was causing the headache. This procedure helped immediately.

With my headache gone it was time to get the results of my tests. I don't remember much about the doctors appointment. I know that both of my parents were there with me. I couldn't even tell you if I cried or not. If you know me at all, I most likely did cry, because I am a big cry baby. I do remember leaving the appointment though. I remember thinking that I wished the spots on my brain were cancer instead. Looking back I don't agree with my train of thought, but at the time MS was a life sentence and cancer, well you can beat cancer. I know it's kind of messed up thinking really, but really I didn't want either.

I have MS, now what? Welcome to the wonderful world of injectables. There is no cure for MS, but there is a treatment. It involves a syringe and a very sharp needle. Not really my kind of fun. The nurse came to my house to show me and my family how to prepare and administer the shot. The nurse then watched me do my first shot. It took me a good ten minutes of convincing before I actually did it. I wouldn't let anyone watch me, I guess it made me nervous. The first three months of being on my medication I would sit in my room for an hour or so with the music blaring. I always had the song "Hold on" by Good Charlotte on repeat. For some reason that song got me through it, eventually.

I've had some flare ups since then. Mostly my flare ups present themselves as weakness in my legs. They feel heavy and uneasy. I've been in the hospital on IV steroids and I've also tried IVIG treatment from my home. I've been through a lot with my MS. I have missed a lot of work and a lot of school because of my struggles. It's not easy and every day I have a different story to tell.

My hope for this blog is to not only inform people about MS and the struggles it creates, but also, and most importantly I want other young people with MS to not feel so alone. The support groups and MS gatherings are full of people who are older and have had MS for 20 years. I remember feeling so alone after my diagnosis and so I want to help others.


  1. What a great first post, Megan! I so can relate to so much of what you said. I really liked the sentiment in the lines, "Day by day it traveled, it expanded to my waist and wrapped around it, like a hug. Not a hug I wanted." It truly wasn't what any of us wanted. And as far as your parting shot, "I remember feeling so alone after my diagnosis and so I want to help others," with your blog you soon will find you aren't alone because you're there to help others. Keep up the great work!

  2. Sounds just like my story, ER 3 times in one week, MRI's and the dreaded spinal tap turned spinal leak! There are so many of us younger adults with MS its important we share our stories. We are not alone.