@DominicS

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DominicS

Wait. But why?

Does anyone else find the idea of waiting until sicker before stepping up treatment rather odd? I am getting v. slowly increasingly frustrated with the attitude that in order to access the most efficacious MS treatment (HSCT - Stem Cells) I have to decline to a certain point degree of disability. I do not enjoy the effects of MS and would rather have short term pain for long term gain. At 50 (and one-half now) I am increasingly sensitive to the idea amongst clinicians that post 54/5 then the gains from drug treatment are, and I paraphrase here, not really worth it. Suddenly, 4.5y doesn't seem so far away. I can't believe how fortunate I've been - 26y or so and RRMS with just a cane, mostly because I have a ginourmous screw into my hip joint, a knee op and four ankle ops , all on the right leg, and the MS likes to be a bugger where there has been previous trauma - but my thoughts turn increasingly to how to beat this bugger (MS) and how to keep in front of it. I don't want to give money to an eager and willing Mexican/Panamanian/Russian clinic. I simply do not trust the idea that, upon return, I won't catch some ghastly lurgy and then drop into the NHS and expect them to 'fix it'. Assuming it all goes well in the first instance. I find it odd that we only ever seem to hear of the 'I'm cured' stories and never anything about complications, death rates, failure to improve disability and so on. Has anyone on here had experience of similar? The, 'Hurry up and wait' treatment strategy. It feels like closing the gate after the horse has bolted.