Progressive Relapsing MS

Everyday living
1

I need to know if there is anyone out there who has Progressive Relapsing MS?

I was dx 2006 PPms then a relapse in 2007 followed by progression then 2nd relapse a few weeks ago. Both times ended in Hospital with IV steriods and steriod tablets at home. Still having the tail end of the relapse now but at last I can see with out blurred vision to type. I am on Baclofen and Regurin XL & Betahistine.

My frustration is this, I feel as if I am totally on my own with this one as I am neither one or the other! But I have symptoms of both. I was left to my own devices for 7yrs by my Neuro/ MS Nurse I want to know if other people have had this experience. I do however have a fab physio.

I can’t find any info on PRMS and I am not offered any type of drugs other than the ones mentioned above. The disease is frustrating we all know that but the lack of understanding and information is more.

OK had my rant know - sorry about that!

Lisa

2

I had a similar experience to you (in some ways). Diagnosed with MS in 1999, after physical deterioration, which continued quite slowly for the next eight years. I sort of assumed I had PMS until I started having relapses in 2007. I got better after them, although never completely, I was always worse than I had been before the relapse. I started seeing a new neuro in 2011. He prescribed steroids during a relapse - I improved a lot and he felt this showed I had RRMS, which meant I was eligible for Tysabri.

The definitions of PMS and RRMS are not very clear but I think if you have seen big improvements from having steroids then you must have been having a relapse and you have RRMS. I think PRMS is when you have relapses (i.e. bigger deteriorations) but you don’t get any better from them afterward, even with steroids. In other words, you don’t have any remissions.