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@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
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@ash81uk
@ash81uk
 

I don't know about PRMS/SRMS but I have been visiting a clinic in Cambridge UK, and I have been on Clinical trials since 2003, lemtrada was at this point called campath. I have always talked with others in the waiting area at the clinic, and result are generally always quite positive, I have spoken with 2 people before now who had very bad vision due to MS and had been recovering well from this problem. I have had a couple of relapses in the last few years, but then i have always pushed myself too hard. Partying and drinking too much probably hasn't helped me in this area. I have always worked full time since 2003, and I try to workout and cycle as much as I can because I have done some reading about neuroplasticity and how the brain wires itself, and I think it can rewire enough to get around some of the problems caused by MS. This would be a very difficult task for people with PRMS, but I believe nothing is impossible, I see it like a baby learning to crawl and walk for the first time. It takes time and effort, if people who have strokes can be rehabilitated over time, I think someone with more severe MS (SRMS/PRMS) should be able to get more mobile as well, over time.

@JasFromTas
@JasFromTas
 

Thank you both Chaps, you have been most encouraging. It pains me to admit it but I have almost resolved myself to not being able to get back to my full mobility (though @ash81uk that would be fantastic!) but if I can stop / slow down my rate of decline I will be VERY well pleased! I certainly do believe in the power of neuroplasticity and brain retraining. My MS is all spinal, so I figure (in my brain at least) there is plenty of scope to 'reassign' all those (previously leg/bladder orientated) neurones in my brain to pay more attention to my arms/thinking! I am working on this! @orlando27 the start of your journey sounds a little like mine. I have also been on Tysabri and Gilenya with little (if any) benefit. I do hope that today (your day #1?) has gone well and you are feeling ok. Thinking of you! Jas