Hi Flowerpot, I agree with what you are saying, let’s see what other’s, if anyone has to say, Take care.
Jean x
For people withSPMS who still have relapses SIPONIMOD has been approved by NICE but the conditions are fairly tight.
Look up the Chariots trial for those with EDSS scores of 6.5 or more (basically in a wheelchair) this is using Cladribine in a different way.
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I was on the two forums prior to this one. Joining first 2006 when I was diagnosed. I was a bit obsessed back then, hungry for information and desperate for something which might help. I think I’d have tried anything!
Despite decades and no doubt millions of pounds spent on research it seems there’s still a lot to learn.
I don’t think there’ll be and effective treatment or cure until they find the cause. Here’s hoping.
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Not generally life threatening but there can be an end stage.
I’m late coming into this group as have just been trying to deal with stuff!
But lately I find myself agreeing so much with flowerpot who has struggled to find interest in PPMS. It took me just over a year to be diagnosed which was mainly due to NHS delays between every procedure. I was quietly advised to take a second opinion in order to move things along. 7 MRIs later…I sort of feel it’s too far gone now….
Strangely although it’s PPMS there is inflammation on the MRIs…I have been taking ibuprofen off my own back which make me feel considerably better. The GP has given me lansopraxile to help my stomach but the neurologist isn’t interested at all. And I can’t seem to link up with any team…..an MS nurse visited..promised referrals but that was ages ago …nothing.
It feels as if it’s all about MS but not the patient.
Sorry to moan….must be another symptom!
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Hello and welcome. I fear I mostly post on here to have a moan!
I suppose I’m lucky, I feel well and I’m not in pain. I can weight bear to transfer, can no longer walk, lost my fine motor skills and my independence. There’s always someone worse off. It doesn’t make me feel any better, but helps me keep it in perspective. Best of luck to you Eve x
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My mum was told the exact same thing in 2012!!