(¯`·._. MA SEP, MON ENNEMIE INTIME. ._.·¯)Atteinte d'une SEP (sclérose en plaques) de forme progressive rapide depuis 98, je m'efforce d'apprivoiser mon ennemie intime. Coups de blues, de gueule et éclats de rire!
IVCC/CCSVI, vidéos et échos de murs de ce mercredi.
*Echos de murs; j"ai gardé ceuux d'hier que je n'arrivais pas à lire, auj il fait plus clair!
*CCSVI AUSTRALIA Devin Hubbard: Just scanned a patient with PLS, ALS in half his body, paralyzed left side. He has CCSVI, in our prelim scan, we're going to recommend him for full haacke to get better information, and use to get him treated should the time come. Also got our prelim haacke scan results on our first parkinson’s patient. He has reflux and poor flow, indicating CCSVI. We’re recommending him for full haacke as well CCSVI AUSTRALIA Hi everyone, I've been friends with Angela on Youtube for almost two years. She has been a tireless worker in raising money for MS research through Flowers 4 MS and sharing her story. She specifically has been active with all things CCSVI and sent me an email 21st Nov 2009 "Great MS News from Italy" which proved to ch...ange my life! She has been diagnosed with PML and I know from sharing with her recently we were both uneasy about being on Tysabri for this reason as are many others. All love to you Angela and hope you have the best possible outcome. Kerri CCSVI AUSTRALIA Tysabri users may want to check this one out. "Bernstein's Porges estimates the risk (of PML) jumps to 1-in-400 patients after three years of use." After a dear friend was diagnosed with PML this week in the US, and the fact that it is near impossible to get up to date figures on changes in PML rates, I make no bones ab...out the fact that I will not be having another infusion. I have another 50 years to live and slowing progression (maybe?) for a measly 2 years doesn't seem worth it for me. Kerri CCSVI AUSTRALIA Ok, here is something else. My husband phoned Biogen Australia this morning to ask for the latest PML rates. Apparently the article above is correct that Biogen no longer have to publish results from July this year. The woman said that t...he rates still fall within 1 in 1000 so there was no need. When quizzed about the rates being around 1 in 540 when being on Tysabri for over 2 years she would not confirm but said that it depends on how you read the statistics! When asked if they could supply the latest figures she declined and said that all details of number of PML cases and locations are sent monthly to prescribing Neurologists. So the question is, "are Neurologists obligated to advise patients of the changing rates of PML for Tysabri users so that we can make informed decisions ourselves about continued use?" My hunch is that they only tell us if we ask and they quote the overall 1 in 1000 number generally. Biogen confirmed that there is no reason why neurologists are not allowed to give full details of the number of cases and the locations. KAfficher la suite Il y a 7 heures · J’aimeJe n’aime plus · CCSVI AUSTRALIA Study supporting the Swank Diet presented at ECTRIMS 2010. It's notable that the scientist who presented this (Weinstock-Guttman) has also been involved in the CCSVI project at BNAC (Buffalo Neuroimaging Analysis Center). Is there any reason to not follow an ultra-low saturated fat diet (MS or no MS)? Helen CCSVI AUSTRALIA I used to research anti-cancer drugs when I started working as an academic scientist. The project I was on got government grant money year after year...even though the drugs we made were just slight variants of an already somewhat-successful treatment. There was no design involved. Slightly challenging for a young chemist to synthesise and purify...I learnt a bit as a training excercise...but any "breakthrough" find would have been a complete coincidence. Helen
*Mark Lamp would like to remind everyone that there is more to life than having a diagnosis of MS. DO NOT LET MULTIPLE SCLEROSIS define who you are, but assist you in completing the evolution of your soul's journey. Prayer happens on the knees because we are often driven to them before we seek His Holy Face. Live, laugh, love. You get this life ...to choose fear or love. What is your choice?
*Patricia McDowell Kimball Remember, if you ever need a helping hand, you'll find one at the end of your arm ... As you grow older you will discover that you have two hands. One for helping yourself, the other for helping others. Audrey Hepburn
*CCSVI at UBC MS Clinic - Information and Support From Kathleen Lynch: "To those in the Seattle area: KOMO News channel 4 will be airing a story on local ccsvi patients on November 4th at 11." ~Sandra CCSVI at UBC MS Clinic - Information and Support CCSVI angioplasty is the best treatment I've received in 31 years with MS. So, do you think the MS Socxiety will bring it up in their Nov 20 event? Should we bring it up for them? ~Sandra