@JasFromTas

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JasFromTas

Lemtrada and SPMS/PRMS anyone?

Any experiences out there with Lemtrada and SPMS/PRMS? Does it work? In theory (in Aust at least) you can get Lemtrada so long as you are having relapses (even if you also have progression). I am pushing for it even though I have had a few neurologists errr and umm about my actual Dx (a 'bit relapsing, a bit progressive'). I am currently seeing my neuro about every 6-8 weeks (I kid you not!!! Had appointments in May, April, March, Feb, Jan, Nov, Sept..) and am having neuro changes each time. Last week saw him and my left leg reflexs have gone AWOL (this was news to me, though that leg had been giving way) I was surprised that there an objective measurable neurological difference though from when I saw him 8 weeks ago. Thing is though, even though I am now going through the work-up for Lemtrada, my neuro has been very pushy with the fact that I may not benefit much at all. He has suggested the option of 'waiting and seeing' (which I am not keen on, have had MS less then 3 years and am using a wheelchair about 70% of the time, 4WW the rest. I don't like where this is headed.) At the same time he has offered to go through with Lemtrada. So I am in limbo! Lemtrada makes me quite nervous, as the risks are not insignificant. But then the results in the RRMS peeps seem quite outstanding. Experiences anyone? Jas