Friday, November 30, 2012

Zivadinov testifying to the Canadian Senate

Here is an interesting (though long) presentation to the Canadian Senate by Zivadinov and the subsequent Q&A session: Zivadinov at Canadian Senate.  While I don't agree with him that people should only have CCSVI treatment as part of randomized trials (for people who are going downhill fast, you would be taking away one of the few hopes they have of returning some quality of life), and I still don't see good evidence for his arguments that MS may cause CCSVI, I think it is worthwhile to watch the entire video for the sake of getting a feel for current expert understanding of CCSVI.

Wheelchair Kamikaze

Here's another good (though tough to read) essay from Wheelchair Kamikaze on the darker side of dealing with the ugly disease that is MS: WK's essay.

Tuesday, November 27, 2012

Sure glad I didn't wait!

Just over three years ago I heard about CCSVI and its treatment.  After a couple weeks of fevered research, I decided that Zamboni's theory made a lot of sense, and that given the rapid deterioration in my MS symptoms, I should take the earliest possible opportunity to be tested and, if appropriate, treated for CCSVI.

I'm SO glad I didn't wait for the testing and treatment to be made available in Canada because, if I had, I'd STILL BE WAITING FOR THE RESEARCH TO BEGIN!  Geez, what a travesty!

Monday, November 19, 2012

Virus or Stenosis?

I'm off Baclofen again... it didn't seem to reduce my spasticity and I was starting to feel tired again.  Since that is a possible side effect of the drug, I thought that was the cause of my increased dizziness and fatigue.  However, I've been off Baclofen for almost two weeks now, and I've had some days of greatly reduced energy, seemingly tied to a pressure I feel in my head, behind my right eye.  Could it be increased stenosis of my right jugular, or some kind of low-grade virus that just won't let go?  Just when I figured it couldn't be a virus that could last so long without turning into anything more, tonight I'm starting to feel something in my chest.  Whoopee, I think I'm getting a cold!