Wednesday, February 11, 2009

Still sleepy but I'm a twitching and a message not from our sponsor

I received this message the other day in my comments section and I'm placing it here because I know some of you readers are also MS bloggers. I haven't done any searching to see what mediciglobal is and if this is even legit. Maybe one of you has already done the searching and can inform me or one of you will do the searching and then can inform me. I hate to put up any type of misinformation and I am wondering who Ashley is a Patient Advocate for as she doesn't mention the actual group she works for in the message. If anyone knows anything about this, please let me know. With no further ado, here is Ashley's message:

{I couldn't seem to find any of your contact information, so I hope you don't mind me leaving a comment on your blog!

My name is Ashley Toal, and I work in Patient Advocacy. We’re working on a multiple sclerosis clinical research study assessing the safety and effectiveness of an oral investigational study medication, teriflunomide. We’d love your help in informing the MS community about this study. Since your blog is so influential in the MS community, do you think you'd like to post some of the study information on your blog?

You can contact me any time at and I'd be more than happy to e-mail you the information.

Thanks again!

Ashley Toal}

Okay, now back to me, me, me.

I was still sleepy this morning but woke up the first time before eleven, methinks it was about nineish. (I went to bed about 9 p.m. so it was about twelve hours of sleep.) I got myself up and threw on some dirty clothes and ate a breakfast of salad and leftover pizza. I also threw some kitty vittles in the wonder cat's bowl.

I watched a little TV and felt tired again but I had taken my morning meds today after forgetting them yesterday until too late. I knew it would be a shorter nap because I had taken my Provigil this morning. The second time I woke up it was about 12:30 p.m. and I putzed around for a bit before taking my shower.

Since then I have played on Facebook, ordered contact lenses online, and dragged my laundry over to another building to use their washer as ours is broken again. I have since dragged it back over to my drier and it's spinning around. I am also washing the dishes in cycles, so many for a few minutes, then back to the computer, and repeat. I fed the cat his afternoon dinner. Now I am awake.

Not singing and dancing awake but awake. Oh, and the 60 degrees predicted for today was a big ole bust. It's raining now and I think it hit the high 40s. I am still wearing my shorts because by golly I shaved my legs and that is just the way it is. You only really get one good day when you shave your legs and this is it so I am showing those piano legs off.

Now to the twitches. I get them primarily in my fingers on the right hand, my eyes, my legs, and the bicep area of my left arm. I sometimes get them in other places like my lips or my buttocks; I can hear Forrest Gump right now telling the President he got hit in the buttocks from that famous movie. I mostly get them in my hands and eyes at night. Before I fall asleep while reading my eyesight gets really wacky from the twitching and getting tired. The words slip away off the page and lines disappear into other lines and letters aren't in words in the correct spots.

The twitches aren't painful, just sometimes slightly annoying, especially in the fingers. Now spasms can be painful. I generally get those in my legs at night and I wish them on no one. I have had spasms so bad in my legs that my whole leg pulses as my calf muscles spasm while the leg is pushed out into one straight line. You can't move or bend the leg and you can barely breathe because the pain is so bad. The muscle cramps and spasms for 5 minutes, then ten, then maybe twenty or more minutes. It's as if the calf muscle is trying to birth itself through the skin. Nice imagery, huh?

People say to get out of bed and walk or massage the muscle. When you get spasms like this the leg is no longer my own. It's taken over by the spasm and I cannot move. The slightest move makes the spasm stronger. It's all I can do to keep from screaming because I try to control the pain by the pregnancy type breathing and prayer. Unfortunately, once it stops and I do get out of bed I am hobbling and the muscle is twitching again which usually leads to another full on spasm and little sleep. This process can go on three times in an evening of "sleep" and basically gives you a rough start to a new morning. These kind of spasms I generally get in the summer, yippee.

So twitches I can handle. Anyone else out there get those annoying little bug you twitches? Mine are pretty much daily but I can deal with them. For those of you with spasms I feel for you, I really do.

I may not write tomorrow as its haircut in the morning and in the afternoon I am going to the doctor's with my dad and family and then we are eating at Red Lobster's for my brother's early birthday. He will turn 30 on Friday which is when he is leaving to return to Iraq so that's why we are going out tomorrow. I'll have to wear one of my new PIP, probably the jeans.

Thanks for stopping by!


Denver Refashionista said...

I forwarded you this email too. Good luck with your investigations.


Yep, mediciglobal is the PR firm representing the drug company, Sanofi-aventis. I asked Ashley some specifics about the drug. Is it a "mab" drug, or anti-TNF, or what is the mode of action? Of course the response I got was more PR and less science.

But I did conduct a search on the drug and found a detailed piece on it. You can find that at the top of this post -