Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 We are looking at putting my husband on Tysabri. Nothing has worked for him. He has had at least 3 major flares (requireing hospitalization more than an er visit) in less than a year). He just got out. This was after 6 months on Copaxone and steroids. Current issues we are worried about.... 1. He is also a diabetic and they seem to exacerbate each other. 2. We don't have the results from the JC Virus test back yet. 3. The cost (we both just left our jobs to get this in order). It was to the point where he wasn't able to function and my medical conditions were getting worse. 4. Everyone tells us that the chance of him getting the brain infection is small but..... They also told us it was 95% MS then it was 95% Cancer then it's MS again. So while I do know it's MS I am concerned. What I worry about the side effecs and how hard they can be.  Donna in SC (was VA) " Stress is the confusion created when one's mind overrides the body's basic desire to choke the living daylights out of some jerk who desperately deserves it. " --Unknown >To: mscured >Sent: Thursday, May 17, 2012 3:35 PM >Subject: Re: tysabri > > > >I have been on Tysabri for 2 yrs and I havent had any problems with it. I dont have any flares ups anymore. I just go in every month to get the IV done. My doctor checks my blood every year for the JV virus and was told I have zero chance of getting PML. No new lesions on my MRI. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 Yeah the tysbari miracle! I have spoken to three ms specialists now and they would not put their patients on tysabri. They aslo got to get to know my beloved who is now classified as atypical ms, yet a few docs call his condition lyme,viral, and co! He tried interferones, steroids, copaxone, and tysabri. Dont want to scare u but want u to be careful, he go worse on all ms drugs, tysabri however almost killed him, twice! Cardiac arrest, once i called 911 the second time he was still in the hospital after the first cardiac arrest! He is 37! Ya, thanks but no thanks! Pharma can kiss our behinds BIG TIME! Then again, we do have a friend who seems to have true ms, and she does well. I guess u gotta figure out first what is his real situation! Cancer and ms are quite different cats,both bad though. He is also a diabetic. How much have u been able to do for him with just eating habits? Just wondering. Hope there is something here for you to think about... good luck and god bless! BB Connected by DROID on Verizon Wireless Re: tysabri > > >Â >I have been on Tysabri for 2 yrs and I havent had any problems with it. I dont have any flares ups anymore. I just go in every month to get the IV done. My doctor checks my blood every year for the JV virus and was told I have zero chance of getting PML. No new les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 some suspect lyme ? did he herx on antibiotics ? that would be some validation that it is lyme On Thu, May 17, 2012 at 7:32 PM, biancabaldwin@... < biancabaldwin@...> wrote: > ** > > > Yeah the tysbari miracle! I have spoken to three ms specialists now and > they would not put their patients on tysabri. They aslo got to get to know > my beloved who is now classified as atypical ms, yet a few docs call his > condition lyme,viral, and co! He tried interferones, steroids, copaxone, > and tysabri. Dont want to scare u but want u to be careful, he go worse on > all ms drugs, tysabri however almost killed him, twice! Cardiac arrest, > once i called 911 the second time he was still in the hospital after the > first cardiac arrest! He is 37! Ya, thanks but no thanks! Pharma can kiss > our behinds BIG TIME! > Then again, we do have a friend who seems to have true ms, and she does > well. > I guess u gotta figure out first what is his real situation! Cancer and ms > are quite different cats,both bad though. He is also a diabetic. How much > have u been able to do for him with just eating habits? Just wondering. > > Hope there is something here for you to think about... good luck and god > bless! > > BB > > Connected by DROID on Verizon Wireless > > > Re: tysabri > > > > > > > >I have been on Tysabri for 2 yrs and I havent had any problems with it. I > dont have any flares ups anymore. I just go in every month to get the IV > done. My doctor checks my blood every year for the JV virus and was told I > have zero chance of getting PML. No new les > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 Agreed !I can completely understand people's desire to remain relapse/exacerbation free. I've been lucky wit it. I've been handling it using diet and supplements to contain the 'MS'. I haven't had a relapse or a bump in the road for so long that I panic whenever I'm just tired! ;)I had my venoplasty (CCSVI procedure) in Nov of '10 and haven't had an issue since.Whilst the procedure isn't a 100% 'natural' way through everything, I believe it was the best thing I've done since dx - I wish I'd been able to have had it done a heck of a lot sooner!Good luck with your Tysabri journey - fingers crossed for you (and everyone else too) with it. 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: jsclue@... Date: Fri, 18 May 2012 14:31:54 +0000 Subject: Re: tysabri Me too . I was on it for a year, cleared to have a baby, off for a year getting and then being pregnant, and have now been on it again for about 18 months. I'd love to do things naturally, but it's hard to refute almost 4 years without anymore relapses. in Nebraska Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2012 Report Share Posted May 19, 2012 fungal infection in brain, spine,and blood. vision-only see shapes......kidney function is bad just got message he had a stroke -- DeLo Quote Link to comment Share on other sites More sharing options...
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