It's been a tough battle, but I'm pleased to announce Nancy Reagan's "Just Say No" campaign has beat out Nike's "Just Do It"!
I'm talking about the ol' spinal tap...lumbar puncture...LP. I just got word this weekend from Dr. She Who Will Not Be Named that I DON'T have to have the dreaded spinal tap. This WAS her idea and not Biogen Idec/Tysabri TOUCH pushing the lumbar puncture issue.
We discussed the event extensively via email, with me telling her my nightmarish experiences and she explaining her rationale for wanting the spinal tap. I read her reasoning and made my decision (it's nice to have docs who LET me decide!)...NO LP.
She tells me 800 MSers receiving Tysabri had their CFS (cerebral spinal fluid) examined for JC virus (that's the nasty virus that causes PML...y'all know PML, so no explanation needed) and not one came back positive for the virus in their CFS. She and another neurologist on the Advisory Committee voted FOR LPs to be done because they didn't feel 800 was an adequate sampling...the other docs voted no...so the Tysabri folks did NOT include this test in their protocols.
I truly appreciate her careful considerations and medical input, but I decided to "Just Say No" to the spinal tap since she is giving me that option. She assures me I will still be a candidate for Tysabri even without the LP. I just can't put myself through another one of those tests...I really AM spineless!
Whew! One less medical test to have to prepare for with my already fragile psyche. Now I can focus all of my anxiety and inappropriate neurotic worry on my colonoscopy this week!
"Butt" I digress...
3 comments:
Girl, I'm so with you and soooo glad that you were able to bypass the LP. Ughh....I hope to never have to endure one again.
Good that Dr. She Who Will Not be Named listened and went along with YOUR desciion....oh geeze...maybe I need at ask about Tysabri.....what's up with my spellling lately?
I don't do this brain not working stuff well.
Maybe a massage will help me feel better and a cup of tea with my friend? Where ya wanna go?
~~hugs~~
i am so relieved to read that you have bypassed the LP. I was worried for you.
I am glad you don't have to go through that horrible LP again! I never want to do one of those again. For me though I think if I did HAVE to go on Tysabri (my doc has been talking to me about this also) I would probably go and head and do one anyway (as horrible as my experience was) because the idea of PML shares the crap out of me.
I wish you the best with all of this. Have a great week and take care!
Jaime
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