Tysabri - week one

[Cosmobirdy]

Hey guys,

I'm a couple of days late - sorry... :)  Got two extra kids home right now, and it's chaos and mayhem at my house, lol.  But I know some of you wanted updates, so here we go...

Not a whole lot going on, really.  I seem to have a bit more energy in the mornings (only partly dead, instead of zombie dead, lol), but by the afternoon I'm usually just as dead tired as before.  I know it usually takes 2 - 4 treatments to notice much in the way of change, so I don't expect much yet at this point.

Been having headaches more than usual, but who knows if it's from the Tysabri or just life in general, lol.  Most of my symptoms haven't changed much yet.  The bugs aren't crawling up and down my back as often, so that's nice.  Not so much buzzing in my pelvis, either.  Still having transient awkwardness in my fingers, and muscles twitching in my right arm and left leg.  Still tingling in both legs.  Some pain in feet, but not terrible.  

Now I've started having pain in one area of my left thigh - kind of feels like someone is twisting the muscle, for lack of a better way to describe it.  I kept rubbing it, without even thinking about it (My coworkers noticed it), but that didn't help.  It's a bit better yesterday and today, but last week was VERY uncomfortable.  

Also now have started to have pain in my left hip -never had that before.  Got really bad over the weekend, and is still very uncomfortable.  Seems to be in the joint, rather than the muscle, if that makes sense.  I don't know if it's related to the Tysabri or not.  I remembered yesterday that one of the "common" side effects listed is joint pain.  I always assumed that would be in the extremities, for some reason....like knees or elbows or wrists or something.  I guess it could also mean the "big" joints like hips... :)  But maybe it's just from the MS in general, or something unrelated, like my gait is off more than I think and its a compensation thing.  But I would think if it was that, it would have happened long ago, and wouldn't start suddenly like this did.  Who knows....I am just going to keep an eye on it, and I'll call the neuro if it gets worse, cause at this point nothing I have for pain seems to touch it.

I'll try to keep you all updated as I go along - I can be the test subject for all of you, lol.  I wish I could be here on the forum more......that would be one of the best things once I feel better.....to be able to hang out here more with you guys... :)

Bye for now,
Rita

[Fluffysmom]

Try not to feel guilty about not being to keep in touch; keeping in touch with yourself and how your feeling, and your family are the most important things at this point.  We, of course, want to hear how you're doing now and then, but understand what you're going through.

I do feel guilty about not keeping in touch with people; I think that's a normal part of today's fast-paced world, and then when you add in something like MS and fatigue and appointments and foggy brains and all that, it becomes even more difficult.

We have a big pool of caring, love, and understanding going on here, so just stop by and take a dip from time to time.  See, we welcome you with open arms, no recriminations, just happiness at seeing you and many wishes that your condition keeps improving with this new med.

Lots of love and hugs,

Kathy

[Cosmobirdy]

Thanks so much....you guys are awesome.... :)  I have missed you so much!  I feel so guilty that I am not able to keep in touch like I used to with all my friends here.  I barely keep in touch with anyone right now, so it's not just you guys, lol.  My regular email inbox is always full of people I owe letters to.  I always feel guilty, cause I feel like no matter what I do, I am letting someone down for some reason....do any of you feel like that sometimes, too?  Just please know, even if I haven't been in touch, it doesn't mean I'm not thinking about you guys....

The hip was a bit better today, so cross your fingers.  I knid of think it is probably from the Tysabri, too, Heather......:)  It was weird, cause it started exactly a week after the infusion.  But I am trying to be patient and see how it goes the next time or two, before I blame the Tysabri.  I will mention it at the next infusion, and see if my neuro can prescribe me something just in case.  He is usually really good about not wanting me to be in pain.

I really appreciate all the kind thoughts and prayers...you guys have always been so good to me... :)  And don't fret - I'm doing OK - honest.....:)  Things could be alot worse, and I always try to remind myself of that!  At least I get the opportunity to give this a whirl - thank God for my insurance.  Take care....I'll give another update soon...

Rita  

[Fluffysmom]

HI, RITA!!!!!!

It's so great to see you!  I was thinking you had started the Tysabri before now, but my brain doesn't always track things the way I would like.

I hope it starts working for you soon, and if the pain is a side effect, that it fades, or you get another medication to counteract that side effect.

You rock, girlfriend!  Two kids at home, working, and dealing with feeling like a zombie and new pains.  You're one tough cookie!  Oh, a cookie sound good.  I just got back from my mammogram and she really squished them hard; I could use some comfort food.  See, I told you my brain goes off on it's own track!

I've missed you, too.  I totally understand that it is next to impossible for you to be posting now, so I can't thank you enough for making the effort of letting us all know how you're doing.

Feel better soon.

Bunches of Hugs,

Kathy

[Heather3418]

Gosh girlfriend, you are going through the wringer.  I hope and pray that his Tyasbri will do the trick and help you get this monster under some type of control.

I haven't talked to you in so long...I have really missed you.  We have seen so many of our members move on with other things in their lives and we have missed them all.  I am one of those that is truly addicted to this Forum, so I keep plugging away when I can.

I have heard of the joint pain with Tysabri.  I also had that when I used to take Avonex.  I could always relate it to my injection.  Are your doctors willing to give you something to help combat any side effects from your injection?  When you say that this pain seems to get bad after your injection and last for days, tells ME that I DO believe it IS caused from your injection.

I wish I had some better answers to your plight.  All I really can do, is to let you know that I support you and want you to know that I am here for you. I would do anything I could to help you.

Please stay with us and post when you can.  Keep giving us updates and please know how so many care what happens in your life.

Big Hugs and Much Love,
Heather