MSNik

Hi Dove. Stilll alittle confused by your post, but Ill try to help.
If I understand you right, you think you were dx with RRMS and put on Betaseron, but now you are saying that you think you have PPMS? Again, I ask you why you think that.

Its not a "given" that all forms of MS will progress. Its possible, but for you to go from RRMS to PPMS, would be very odd. Primary Progressive MS is usually diagnosed from the beginning- there are no remissions or times of inactivity with the disease, it is not the SECOND stage of MS but an original stage which never seems to ever take a break....less then 10% of people with MS are dx with Primary progressive. Now, if you have PPMS, you wouldnt be on any drugs at this time, nor would they be talking about switching you to any other disease modifying drugs which are currently on the market.

The other thought that I am having is that Betaseron, one of the oldest and most used Disease modifying drugs might not be working well for you at this point- maybe they are talking about switching you to one of the stronger drugs to see if it helps you more? Thats not so uncommmon, but doesnt change your dx from RRMS....if this is the case, then you might be having symtoms, or activity on your MRI? there would have to be a reason why they would switch you to another drug....Avonex is slightly stronger, Rebif, stronger then Avonex, but the same drug (both are different forms of Interferon's from what you take now) and then there is Copaxone. A synthetic drug which is not an interferon,but works in such a way that many have success using it.

Whats going on with you that they are changing your drug? Are you experiencing relapses? Activity? Who or why is giving you the idea that your MS has changed "status"? Its just not right that it could go from RR to PP... there is a stage called secondary progressive MS. This one starts with Relapsing Remitting- and can develope into SP. About 50% of people with RR MS wind up with Secondary Progressive at about ten years of diagnosis. I apologize but I cant remember how long you have been diagnosed. Has it been anywhere near that long? And, again, only half the people ever progress. If you get on a good drug, which works for you- theres still a very good chance you will never progresss beyond any stage other then R/R MS.

I wish you well...
Nikki

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RRMS- dx 05
Rebif 2005-2011
LDN Sept. 2011
"Every New Beginning Comes From Some Other Beginning's End"