sorry posted this in the wrong thread so yeah you are not seeing double if you read this elsewhere

hey folks, I am going to have a blood test or two and give it a try, i have read most of the pml's where in europe another factor that i was given by Nero the neuro is that 5 of them had chemo in the year or two prior to tys,

yeah im scare sh less keep reading this stuff and dont know what to make of it, but like he said with the way its progressing its tys or rebif he seriously thinks a b and c are just going to treat me the same, i have had 6 new lesions in 8 months and 2 that may of been hidden before or just not caught at last time and or 8 new lesions , either way copaxone isnt working or at least it kept my lesions to 6-8 instead of 15 ya know,

i am confused been reading a lot on line spent most of the day reading yesterday, sure wish i knew if this is right. Deb and I and nero the neuro sat in his office for an hour and half the other day, talking all aspects of this over and over finally deb said ok doc franks your son put him on meds he said without a doubt it would be tys if his kid had what i got going on, and he wont change the classification from rrms to spms cause of the insurance company. but he agreed its spms its going too fast losing left leg usage my eye my hand and now its attacking my right side too, so i am confused and as always the more i read the worse it gets lol

any advice would be greatly appreciated and i plan on reading this whole thread this weekend, i have been warned i also did a lot of soul searching and looking up reports of these pml or plm cases, just wish they could figure out why if its this bug that hides in, was it the kidneys? or if it is a fact of chemo treatments interacting with tys.... sorry if this turned into a hijack i figure this would be best place for this if ya want pm me or mail me your views i will read this to get some of your views, i know if i dont try something real soon i will be using a chair on a reg basis, and if there is a chance to halt this or stem the progress a yr or two b4 chair time guess thats good, not sure if risking this plm thing is worth it if i am gonna be in a chair anyway, thas my biggest question is the risk worth whats sort of gonna happen from MS or my degenerating spine, im just confused still, so got more reading to do and hey i may not even pass the blood test,


peace folks, sorry i went on so much

I just thought I would share a bit of my story. Summer 2006 I saw myself going slowly downhill-no neuro said spms but I thought it. I was dx 1988, remission for 13 1/2yrs and now 6 1/2yrs of sx. I changed neuros after MRI she thought I should try Ty-the odds of pml were 1/1000. I considered this and the odds of my ms continuing to slowly, quietly take my QOL away.

I went with the odds of what ms was and could continue to do to me and started Ty in Oct 2006. I have never regretted this decision-only wish I could've started Ty 3 yrs earlier before my R leg got as bad as it is. I was off Copaxone 6 wks (due to timing) and saw myself go downhill. After first Ty infusion I was back to where I was on C and after 3-4 infusion I saw better balance, less fatigue and more stamina. At 7,20 and 29 mths of Ty my MRIs showed no new or active lesions and some old ones were better or gone My balance has gotten even better, no fatigue and I almost do any and everything I want. I had that eye thing nystamygus (sp) and now I don't Progression has halted! My QOL has been so improved !!!

I am a very grateful Tysabri user
I know it has not been wonderful or even good for some...I thank G-d this has been the med for me.

Best wishes,
Linda

Hi Frank (and Deb!)

Only you can decide what to do and what your personal risk tolerance is.

I know for me it was the right choice. I wasn't willing to lose any more brain or live with any further disability. The only other DMD I was on was Copaxone. It didn't work. I hadn't had any other treatments except for steroids. I looked at everything available, studied each one, weighed the risks and benefits and made my choice. For me, Tysabri's working.

It helps to be able to come here and share what we know, how things are going with our treatment, talk about it when we have a problem and support others who are in the same place. There's a lot of folks with a lot of infusions under their belts. Therre's folks who were in the original trials and folks who fought to get Tysabri returned to market. There's lots of good information in this thread.

If you have any questions, just ask!

RW, I'm glad to hear your latest infusion went well..Sometimes it's GOOD to be boring!

Thank Ya Po!

I didn't get to comment on YOUR First infusion!
Glad to hear it was an uncomplicated day!
How did you feel when they started the infusion? Relief? Joy? Terror?
How are you feeling now??

I know for me, the whole process of fighting for Tysabri came down to when I signed the paperwork with the doctor. I heard a song on the radio out in the office- David Bowie~ "Grounds Control to Major Tom" I told the doc that the song said it perfectly...commencing countdown, engines ON!

A month later I heard the song again and it raised every hair on my body when the nurse turned on the pump and I watched that first drop. It had been 26 months of waiting and fighting. I had tears in my eyes and the nurse was blown away when I told her about what had happened during the previous 26 months.

I still think of those moments at the start of every infusion!

and yes...boring is VERY GOOD!

"...Take your protein pill and put your helmet on.." LOVE that song..
I spent some time calming my mind before I went. I wasn't nervous, wasn't even a spaz (), just curious..Watched them hook me up and the med dripping into the tube..Thinking how ridiculous it is to make someone jump thru so many hoops and wait so long for such a simple thing. Mostly, I was relieved that I didn't need any Benadryl..
I felt remarkably good the first couple of days. Now, I'm pretty much back to my old, old feeling self. Oh well, at least I know I have something to look forward to!

Weegot- I am dxed ms sever 2-16-08. My desion to go on Ty was made in less then 5 min. I am not afraid of the so called risks. It is my understanding many died when other drugs were 1st brought on also. But this has nothing to do w/my desion. I do not wish to be in a chair ....I refususe to live like that or worse. My choice! I want the most agressive possible.

Bottom line is it it a personal choice as River said. I here u're words & u seem to be willing to take more from this disese then I am. We are all different! All I can can say is search u're heart. I also do not think the risk of a problem r high at all. Ty is just the newest drug so there r minor risks IMO.


I wish u the very best

BTW all - my cog is bad & forget typing - sp... I do not see a ck on here but prob is. So sorry 4 mistakes - I just give up on that - least of my probs - hope u understand.

I had my 2nd infusion yesterday. I feel the same. Don't get me wrong, I wasn't expecting a miracle, but I guess I was hoping. I don't feel worse, so I know that's all I can ask for. How long did it take for people to feel better? I've heard a lot of 3 or 5-7. Is this accurate?

Hi Stacer,

It was almost a year for me before I knew for sure I was feeling better. I actually felt a lot more tired much of the time for the first several months. It's been a very gradual change for me though.