Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Thursday, March 01, 2007



My Tysabri Diary...

From a funny lady I met after my posting on Stuart's Tysabri Poll and posted with her permission:

Lauren - I am such a dingbat - I just figured that this e mail was from you - the Lauren with with amazing web page and blog! Hey my cognitive function seems to vary from moment to moment sometimes.
So, that being said - I just wanted to tell you what a great and informative blog you have I am very very impressed with it!
I'm just starting to get more involved with MS organizations, web groups etc....I was dx'd in 2000 accidentally - they were actually looking for brachial plexus damage from my mastectomies! I was an RN and every once in awhile wondered about some of my strange symptoms and wondered if they could be MS - but nurses tend to turn everything into a worst case scenario...
Looking back, I'd actually been having symptoms and relapses since my mid twenties but always wrote them off to one thing or another.
Anyhow...I have a question about the Tysabri - it seems that following each dose, for two - three days I am unbelievably crabby, irritable, and just feel mean and pissed off at the entire world..I swear I almost want to slug every one that even speaks to me....so I just hole up in my room and try to avoid folks...LOL
Have you heard of anyone else having this kind of thing happen? Maybe I'm just a nut case....
Anyway, I'm really glad to have found your site/blog etc and hope you are having a wonderful day!
Take care Lauren - you are amazing!
Gretchen

Hmmm, no I haven't Gretchen - maybe you are just a nut case (ducks gracefully at that dayum left hook - "hey... You work out?" lol)

Seriously though, this could just be your body adjusting to Tysabri - I'm not a dr. and you should discuss same with your treating physician - especially if you are arrested for assault and battery (ok, I'm laughing so hard, I need to take a pee break - Ill b.rb.) ....lol

Ahhhhhh, much better - you know I love ya, girl (what's not to love in a new friend you just made that keeps your bladder in check?). Laughter is the best medicine...(wink).

Okay, I'm gonna go watch a movie and lavish some extra love on my kitty before I wake up one morning and find out she sold my caregiver Ray on Ebay - oh, I made a rhyme - heehee.

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org

2 Comments:

  • At 6:36 AM, Anonymous Anonymous said…

    your blog rocks lauren, i have been on tysabri (through trails) since2002 and i am currently trying to give some help to the manufacturers of the drug by promoting it. Spoken to biogen directly who then put my onto their UK promotions lot. So speaking to a lady their next week and we shall see what, i am able to do. Well i figure that I am on the current trial for five years and after that i am on my own. So I HAVE to help the drug be made available on the N.H.S. here in the UK. Otherwise, having no health insurance, it will be the slippery path of degeneration again, and i aint going down that road again! You might have heard about J K Rowlings stand she is making to try and get the scottish NHS to fund Tysabri for the scots, unfortunatley for sll us british MS suffers the one agency that is supposed to promote the best drugs to treat diseases with an unmet clinical need (the national institute for clinical excellence) has refused funding in scotland, and the word from my consultant neuro is that england and wales are likley to follow suit, ALL ON GROUNDS OF COST! bnice to know i am not worth a few thousand pounds a year, with the real possibility i can go back to work and stop getting benefits from the government, therfore paying taxes etc etc etc. But they dont see this and I have made it my mission to get this drug funded. Stay well....

    crippy

     
  • At 4:57 PM, Blogger Gretchen Steele said…

    Yes Lauren, your blog rocks! Thanks for posting my e mail ...maybe it will help to solve the mystery...I betting the vote comes in I'm just a nutcase! Thanks again for all you do! So glad to have made a new friend!

    also - sad to read that UK is being so obstinate about this...

     

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