Friday, February 8, 2008

My New Project

It's not much to look at, as message boards go. But I've been troubled in the past couple of months by changes that have taken place in various spots on the internet. So I figured since I have the knowhow to manage one of these beasts, why not start my own?

With a big hearted webhost name donating the space, I decided to create a gathering spot for any and all MSers, their family, friends, care partners, medical professionals and anyone else who wants to join and contribute.

There's nothing there right now except some examples of me talking to myself, but I would love to have those of you who follow this blog (you know who you are!) invite all your friends and come on over to my place.

It's called mainly because all the good names were taken and I was tired of trying to find available ones. If it's not proper English, I'm least it's catchy and sort of follows along the trend I started with Fingolimod and Me.

So while you are blog hopping, take a minute to stop by and say hi. Think of it as your chance to have a say in what an MS message board should be, instead of joining one already in progress. Post whatever you like and make suggestions...I'm all ears.

I have one section I have made " regional" -- so that people from that specific region can share upcoming events and get togethers. Unfortunately the only "region" I have so far is my own -- NE Florida. If you want your area added, just PM me or leave a comment here.

I know there are a lot of message boards out there, but some are so big, and some are so clique-ish. I just wanted to start one where we are all newbies and get to know each other and share stories and info.

So come on over when you get a chance! And be sure to mention it to all your other MS friends. I can't spam message boards with invites, and I wouldn't want to. I just don't have any other way but this blog to get the message out.

Don't leave me whistling in the dark by myself over there, okay? Come say hi and I promise I'll show up and welcome you. :-) I'm putting out the welcome mat and I'll leave the light on for you.

Monday, February 4, 2008

Possible side effect of FTY720?

I'll be going for my 6 month checkup on the 21st of this month and I think I have a question to ask...

Up until now I have sworn there were no side effects, but it occurred to me the other night that maybe there is. Sometimes when I am trying to fall asleep my heart starts racing. I can feel my pulse beating fast and I feel kind of like I've been power walking or something.

I can lay there and calm myself back down and finally doze off, but it just hit me last night when this happened that "Gee, maybe this is some sort of side effect??" I'm not too quick on the uptake, so sometimes things take longer to sink in for me.

Only thing is, my mother has the same thing happen on occasion so I always thought it was just a familial strange thing. We have several of those.

But ever since I started this study, when my pulse was initially 80 and dropped to 64, my pulse has never reached 80 again that I was aware of... until the other night.

I'm not sure why there is the initial drop in heart rate, or why it would affect one's heart at all, but I'm thinking I better make a note of this and bring it up on the 21st.

Of course, I wouldn't be a true hypochondriac if I didn't lay there in the wee morning hours and worry the heart racing thing to death. I darn near got up and tried to hunt down my Xanax at 3 a.m. just because I had almost worked myself into a panic attack.

However, recognizing what I was doing, and deciding I was more tired that I was panicky, I opted to roll over and get more comfortable. Before long I was sound asleep.

This morning, with my heart rate back to "normal" and not feeling like I've walked a mile, I have a new thing to concentrate on. My hands are tingly and trying to go numb. I'm not jumping to any MS conclusions tho... I've noticed if I hold my neck in a certain position I feel better and my hands don't tingle. I'm pulling for Pinched Nerve.

Didn't mean for this post to be a laundry list of tics and twitches, but I've never had a bad thing to say about Fingolimod (other than saying that name has GOT to go!) and it wouldn't be fair not to report something that seems questionably like a side effect.

Really, tho, when you see commercials on TV for everything from birth control pills to antidepressants where the fast talking voice is smoothing over the probability that you could have overwhelming urges to commit suicide or gamble, or you just might die...well, this seems mild in comparison. And the FDA already APPROVED that stuff.

So if this is a side effect, as long as it's not actually damaging my heart (hey! did I just think up a new thing to worry about??!) then I can handle this "side effect".

Side effects I wouldn't mind but haven't yet experience:
1. Way more energy coupled with a tendency to want to clean.
2. Enlargement of the mammary glands.
3. Reduction in waist size with the involuntary toning of muscles .
4. Reversal of hair graying.
5. Spontaneous ability to speak and comprehend any language I hear.
6. Gambling urges while having premonitions of winning poker hands.
7. Rational Thinking
8. Disappearance of any sign I've ever had MS.
9. Tolerance of bad TV shows.
10. Sudden urge to create gourmet meals coupled with the sudden talent to do so.

Like I said, I wouldn't mind those side effects but you don't hear about them too often.

All in all, I'm still on the side of those who are in the "Sings Praises of Fingolimod" camp. (Be still my racing heart.)