Friday, June 23, 2006

It's Two, Two, Two Posts in One

Better Late Than Never:
I've finally added links to other blogs I read and email with that I promised I'd add. Sorry it took so long!

Update on Pain:
Also to those who replied to my last post, thank you so much for the information!
And to Kim, thanks so much for sending folks my way!! I really appreciate it.

I had to break down and call the docs office and talked to one of the fabulous nurses (have I mentioned how glad I am I switched neurologists? :-)).
She told me that of course MS can cause the pain that I'm having and that since it's gotten to be more than once or twice a day that I should go back on Neurontin. Yippe - NOT!!!
That stuff makes me soooooooooooooooooooooooooo tired!
But after having an entire morning from home into a couple of hours at work and the pain probably took a break maybe a whole half hour during that time, I decided she was right.
I started it two nights ago and until tonight I hadn't had any of the sharp pains.
Not sure what happened tonight, other than it's the end of a horrible week at work.
Stress - there you go!

Or maybe it's the fact that my daughter is just had a cookie with sprinkles and keeps coming over to discuss what kind of cookie I have here at the desk. She keeps eyeballing it. So funny!!! That's not stress - that's just awesome! So time to let loose, relax - forget about hellish work and hellish people and concentrate on a funny, cute family!

I hope all are well!! Take care!

Saturday, June 17, 2006

Sharp Pains

What the heck!?! I have a good scan and all week those bursts of pain have gotten worse!
Yesterday one lasted about 2 minutes. I had another one last night, same place, left arm near the crook of my arm.
So, what is this? Doc said it was something that MS does, shoots out calcium. But I've never heard of this before. Anyone, anyone?

Let me know if you have any more info on this.
I'm thinking with a good scan, things should be good. But this is getting worse. Then again, it's been really hot in St. Louis/St. Charles the past couple of days. Maybe it's the heat.

Take care all!!

Saturday, June 10, 2006

MRI Scan brings good news

I really have to stop going such long stretches between writing.

Okay, to the basics - I had an MRI on May 16. Turns out that it was a year since my last one. Wowzers!
I got the whole kit and kaboodle with this one too, they gave me a lovely drug that let me sleep and I'll tell you,I was so incredibly disappointed when I had to wake up. I was so bummed because it was the best sleep I've had in a long time. Sleep is good.

I was a little nervous about the MRI results, not because I've been having any flare ups, but because I guess I always hope that one day the scan will say, "Oh, we were wrong, no MS!" But I know that won't really happen, so it still makes me nervous.

I've been doing well, MS wise - just these occasional, very painful and extremely annoying bursts of pain throughout my body. Just in the oddest of places - a sharp spark of pain in my finger, another one in my right thigh, another one in my toe, but they never last that long so I just think it away.

Well, the last week in May my husband and I took our Anniversary trip to Hermann, MO so we could go the wineries again. It's our now yearly thing. It was lovely and we had a great rest of the week for our vacation.
Then I got a cold - again.

So this past Wednesday when I went to the neurologist she said, "You know people with MS aren't supposed to get colds - your immune system shouldn't be letting you get away with that."
I'm sure she was being sarcastic - but I also think she had a point.
She then asked about any symptoms and I told her about the bursts of pain. She said that was definitely MS. Then I told her about several other things but she said those were normal people things. Oh, and I have carpal tunnel syndrome. I can live with that.

She then said, "Your spots have shrunk!" Woo-Hoo!! No new activity, no new lesions or larger ones. And she said the big spot I used to have that spanned across C3, C4, and C5 is now a small spot on C3 only!
Great news!!! I'm very excited! Then she said, "The Copaxone is your drug, it works for you so we're not changing anything."
I can't tell you how great that was - but of course I also asked that if there's nothing new and some of these other symptoms aren't MS symptoms does that mean I don't have MS?
"No you still have MS," she said. Then she added the dreaded phrase, "No other disease or anything else can give you a spot like you have on your c-spine." Bummer!

But hey, I'm not complaining - this is great news and I'm doing well, except being sick again. Then I got to thinking - I guess I would rather get sick, because if my immune system isn't working to kill off colds, then it's also not working on eating my myelin. So there!!!

I hope that by taking the Copaxone and by having good results that this can help other people. My neurologist is one of the top MS docs in St. Louis. She studies her patients - so I know that my results help her to help others. That's another reason why I'm so glad she's my neurologist. She's just fabulous - takes as much time as she and I both need to talk and she listens. And she studies my chart! She was telling me stuff I didn't even remember. Just awesome!!

Well, that's enough of my ranting. I hope those who read this are doing great!
Oh - also, there was an article that my neuro wrote - the title was, "You can't die from MS." Pretty fitting. We can't let this make us feel like our lives are over. If anything, it's just beginning. Maybe a different direction then we anticipated - but a beginning none the less.
I was very happy to read that Erik and Erik's girl had a baby recently. That's just excellent.
Knowing I had MS, I decided to have another baby, and I have a wonderful nearly two year old handful because of it. Another woman I know who's had MS for 25 years had both her children after she was diagnosed. Just another example of how this is just the beginning.
Stay well,