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Old 04-20-2009, 12:32 PM #1
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Default any advise or direction will be appreciated

howdy folks have not dropped a thread in the MS forum in a wee bit. you know when you are having MS sx and get the mri and want some kind of answer instead of the

''we see nothing new not sure why all this is going on''

well i got answers this time it has spread through out my spine thoracic(sp?) and Cervical and two new ones in the brain, they found 6 new ones all total. at least i know why i have felt like carpadm all these months

yeah i am a wee bit overwhelmed right now, nero and neuro and myself are to have another pow wow on a new approach with a new interferon.

My main question is, is there a web site or somewhere any one knows that shows all the CRAB meds and the pros and cons or do you look each one up and make your own list, was kind of hoping some one might know of a site, Nero mentioned tysebria(sp?) I just cant think clearly at the all, am all by myself at moment, i would ask everyone how certain meds worked for them, but i have long time stopped that cause, what works for joeblow doesnt for work maryjane this part of the equation i have figured out, doest help the overwhelming feeling, but i do not expect an answer, perhaps a push in the right direction and i dont mean off a cliff type of Push DM

thanks folks, yeah im a bit scared and worried i just dont know what to do


peace
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Old 04-20-2009, 12:47 PM #2
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Try this for starters, Frank:

http://www.nationalmssociety.org/Treatments
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Old 04-20-2009, 12:48 PM #3
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(((((((((((Frank))))))))))))) If you are SPMS, now, then Tysabri is not for you. I thought you had made up your mind to try Betaseron?

I think that's exactly what you should do...give Beta a try.....and call me in the morning..

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Old 04-20-2009, 12:56 PM #4
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I am so sorry you are going through this. I personally have not seen any really good sights that hold one drug against another. Most tend to lean one way or another.

Its so hard to pick a drug that acts so differently on so many. You wont know how any med reacts on YOU till YOU take it.

Tysabri is a HUGE deal. Please do your research.
The USA has a TOUCH program that is pretty good at all the screenings and follow ups, but its not a drug to be taken lightly. It has a really good success rate on those that can take it.

I hope you get some answers.
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Old 04-20-2009, 01:09 PM #5
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no decision had been made yet and we were waiting the mris. i already told him i not too keen on the tysb one, Ive been leaning towards the beta also, i am getting the impression that he is in this companys pocket along with the other one he is pushing , not that, that would ever happen in this country thanks Sally and BTY and Dej, this is just so confusing to me at times, my brain doesnt digest info like it use to. i dont know thank you for the quick replys
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Old 04-20-2009, 01:26 PM #6
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Hey Franko! Sorry your'e having a rough time of it, and of course, I can't help w/your RX questions; plus you told me I couldn't push you off a cliff~ So, all I can say is, hope between you and the Dr's, you can come up w/something that will work w/your body and help you deal w/this disease. Hope you feel better soon.


*still think a good clunk in the HAID might be good medicine for you. Take care.
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Old 04-20-2009, 01:32 PM #7
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I am sorry to hear about your news. After my experiences with all of the CRAB's I have no words of advice to offer regarding drug choice. At times, it would almost be a relief to just be told this is what you must do.

Tysabri is a big deal, but alot of people seem to be experiencing success with it. Betaseron is typically the CRAB treatment prescribed for those that are classified as SPMS as well as others. There are a few other options out there such as rituxan or chemo, but I have not been willing to try them as this point.
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Old 04-20-2009, 03:20 PM #8
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Frank, that just sucks. Sorry to hear the news. It is so overwhelming when you have to change direction and figure out what to do next. Good luck with your choice and I hope you get to feeling better soon.
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Old 04-20-2009, 03:44 PM #9
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Frank, hey you!! No advice, as I do not even have any type of dx to even get drugs to prevent each year getting worse as it is!!!

But I offer hugss, and I do know the thought process issues when trying to think. hugsss and hoping the dr and you with some good research find something wonderful for your body!! know we are here, sarah
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Old 04-20-2009, 03:57 PM #10
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Tysabri can be used for SPMS patients who also have relapses. The potential risks of PML with Tysabri usage need to be treated seriously (both before making a treatment decision and while on the drug) but so does the potential benefit this drug can provide for our very serious MS disease.
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