I was DX in Sept 2009 with RRMS. Since then symptoms have fluctuated but never really gone away. It is like having a relapse every week or so. Now symptoms are moving from my legs to arms and hands and getting worse. My neuro changed my DX to Progressive-Relapsing MS last month and is considering change in treatment. Has anyone had experience with a Progressive-Relapsing MS DX and can share anything about progression speed and treatments?
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If you go to our Primary/Secondary Progressive MS forum and type PRMS into the "Search This Forum" box, then specify posts rather than threads, you'll find some info from members who are Progressive-Relapsing.
Best wishes to you! -
Hi, its great to meet you. I also have prms, and take avonex for my flairs. I get frustrated when I have flairs because I usually get permenant damage each time. I also have symptoms that constantly progress, but slowly. My biggest comfort was coming here and hearing other peoples stories. It helps to know I'm not alone.
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I also have PRMS. I relapse fairly frequently, several times a year. I tend to keep the symptoms I acquire with each relapse. Speaking to others with PRMS, this seems to be common.
Between the relapses I progress slowly, though one or two symptoms want to move a bit faster than the others.
I've taken Copaxone, Rebif and Tysabri with the best results from Copaxone. Rituxan and Novantrone have been discussed, but I am not quite ready for that yet. Campath is another option we've discussed but as it hasn't been approved for MS yet, my doctor wants to wait. He does say when it's been used off label, it's been very effective.
As soon as Campath is approved, I will be switching to that to hopefully get the relapses under better control. It's crucial to keep them under control as best I can so that I can, fingers crossed, avoid the souvenirs from relapses.
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