So where did I leave off? Oh right, I had just had my first diagnosis from a neurologist….fun times.
To say this news rocked my world would have been an understatement. As I stood outside the hospital waiting for my ride I knew I had to do some research, but first…..to the bar. I needed a drink after news like that.
When my ride got there, a right who was supposed to be there get review the MRI results but missed the appointment…..I When I got in the vehicle, he took one look at me…”How did it go?”
I took a deep breath, “he said there were spots on my scans, not cancer. He is pretty sure I have something called multiple sclerosis?! My file will be transferred to the MS clinic and I will meet another doctor.”
“Wow….are you okay?”
What do I say to that? I really had no idea at that point, I still wasn’t sure what I was facing. I didn’t know anything about MS, what it really was, or what it entailed. I know the neurologist told me some things but I feel like he was talking like Charlie Brown’s teachers after he told me. It would have been good to have someone else there who was listening….I guess I wasn’t.
I responded the only way I could, “No, not at all. I have no idea what this means.” And I really didn’t, I did not know what MS was, how I got it, or why.
It was a couple of months later when I met with my MS Doctor at the MS clinic. During that time I had got to break the news to my family and friends. They were all “here for me” and most knew nothing about it. Except for my Dad, who said one of his friends has a girlfriend with MS, he said he would make a call and see what he could find out. When he got back to me it wasn’t the news I wanted, she was walking with a cane all the time and struggled with other things as well. All that did was heighten my worries….
Did waaaayyyy too much googling and reading stories, some okay and others bad. My health remained steady and no additional attacks came in that time, which was good. But every little tremor or numb feeling freaked me out, even when it only took place for a few minutes. Not that that worry has changed in the 14 years since the diagnosis but still….
I worried about my future and what it meant, was I going to be okay or would I be in a wheelchair. I also read that a spinal tap is one way to confirm you have it, which freaked me out more.
When I met with the MS doctor he was great. He had a very calming demeanor and knew how to calm things down. He said he reviewed my MRI and file of the initial attack, we talked about that time and he said based on this he could confirm that I 100% had MS.
“Okay” I said “what does that mean?”
He preceded to tell me about the treatment options, all 3 of them. 3 that were all some form of injection that I would have to do myself. Fuck me….really???
2 were just “subcutaneous injection” which meant they just barley went under the top layer….I guess that was suppose to make me feel better, it didn’t.
Copaxone _ a daily one that had to be kept in the fridge. Why this was the on I chose I cannot tell you. It was a very long time ago, and some things get muddled.
Rebif® – This one had the lowest effective rate, but only had to be done once a week. By a nurse as it was a much bigger needle. So that was a no.
There was of course secret option 4, which was steroids’ if it got bad and none of these choices worked. That sounded super fun….I chose Copaxone and was told that I needed to book and appointment with a nurse. She would come to the house and teat me how to inject myself and what to watch out for. Goodie goodie, couldn’t wait.
Side note: I am amazed at how far the research with MS has come in 15 years and all the options of treatment now. It gives me hope that they may find a cure, faster than I originally thought.