Monday, August 23, 2010

Discuss Your Diagnosis

So I've gone over this all before, but I wrote this for a new forum for MS'ers that I joined, asking about my diagnosis story. I wrote it there and figured, hey, I'll put it here too...

So, like a bunch of years ago I had the tingles on the bottom of mt feet. WTF, right? But whatever, I just thought I was sleeping weird or something. Anyway, I didn't actually do something about it until much later when it basically worked it's way to half-way up my chest. By that point I figured I was hit by some crazy mystery disease and I was gonna be paralyzed or something by the end of the week! So off to the emergency room I went and did that whole thing. They basically looked at me with puzzled looks, gave me a referral and sent me off for MRIs. In the end, after lots of stuff, I was told that a virus hit my spine. If the feeling goes away after 2 weeks or so, it was totally a virus... and it did. So that's what I thought. It was totally a virus.

So a few years later those tingles came back. Spring of '08. This time it spread through my body quicker. Also, it was only on one side of my body and that included my face. I figure it's the virus again, but I have medical insurance so what the heck, off to the doctor I go. This doctor she tells me I'm stressed...and fat. Um, okay. Thanks. I think I need a second opinion. The next doctor I went to told me I had arthritis and prescribed me a bunch of non-generic meds that he wanted me to buy at HIS pharmacy. At this point my frustrations took over. The tingles went away before, they'll go away again. I can't support these "professionals" who are basically looking for ways to either ignore me or steal my money.

Those tingles did go away, thankfully. Another thing that went away by summer was my job, a company-wide bankruptcy. Also gone was my medical insurance. What did come back? The tingles. Early '09. This time my limbs were the only things that were hit, but it was rough times. Turns out that I use my hands a lot, and things like writing or signing my name became impossible. At a job interview I was asked to fill out some papers and those papers looked like they were filled out by a kid in kindergarten. I wasn't surprised that I didn't get the job...or any other job for a long time to come.

Seeing as I had no insurance, and considering how things had gone before, I basically was ready to ride the whole thing out. Thing was, stuff wasn't going away as fast as they had before. Other stuff was happening too, like I was sleeping more than usual and my mood was (and probably still is) kinda erratic. Finally, my mom's sister had suggested to her I look into Multiple Sclerosis, something their father had apparently struggled with when he was alive. After some internet research I was fairly convinced I finally had found what was wrong with me. Something that a bunch of doctors couldn't see, I was able to see with a point in the right direction and Google. So off I went to get some insurance! Kinda expensive for someone unemployed, but also it could be worse. I had no official diagnosis so I was going in with no pre-existing condition. Otherwise, it would have cost me a LOT more, I'm sure.

The first appointment with my General Practitioner I walked, well, wobbled in with confidence. I had the magic words and I wasn't afraid to use them. Multiple Sclerosis! I have it, now gimmie my disgnosis please. Tell me I'm not insane please. So after a referral to a Neurologist, two MRIs, a needle to my spine, and discussion of what had been happening to me (over the course of a few appointments) I was ready for what I wanted. For what I needed to hear. On June 6th, 2009 I was given my official diagnosis for MS. Now, really, I had that weight off my shoulders from the mystery of it all back when I did all that online research. I was convinced I had MS once I learned about it. This was official though, and that's a nice feather to stick in my cap. I'm not a crazy person with some weirdo disease that no one knows. I have MS... lord, what now?

Well, there really isn't much of a what now. My hands never went back to how they felt before. Then there are the shots or whatever, and learning to take care of yourself (which I honestly SUCK at), but I think the biggest thing that has come from all of this is that it has changed how I relate to people. Mostly it has opened up this whole community of people that understand some of the stuff I am going through, which is pretty rad. Then there are the few people who are in my day to day life that I love dearly and who have supported me more than I could ever imagine. Discovering what care and love truly is and how much it means to me is something I definitely appreciate more than anything else.

1 comment:

  1. you are the first person I had when I was diagnosed. Thank you for being there when I had nobody else to talk to about this. There is only so much you can get out of youtube. Lol You know, the new "Dr." I still remember during one of my very first few shots, My Husband was on fb with you asking you if the "Avonex" shot was going to be this bad always or for how long or what to expect. You were there for that. Thank you. I got Diagnosed the week after I met you in person for the first time. How lucky is that? lol