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One Word

Hi

its funny how one word used by someone else has made me full of doubt - ‘Progressing’.

i went to mainland UK on Wednesday to see a Neurologist who mentioned moving from Avonex to Tecfidera but I don’t know anything about these tablets and they aren’t available on prescription so would have to have a case written to see if they can be added to prescription list. if anyone has/is using Tecfidera please let me know your thoughts.

i then saw the Osteopath yesterday and him referring to my new symptom (doing certain movements using left arm there is shaking) using the word ‘progressing’ has thrown me. I am now feeling scared and alone.

Tracey

Hi Tracey,

Now I’m not knocking osteopaths generally, as I know a lot of people find them helpful, and you obviously have faith in this one.

BUT, it’s still in the category of “alternative medicine”, and he is no way qualified to diagnose that your disease is “progressing”. So frankly, I wouldn’t set a lot of store by what he has to say, and it certainly doesn’t mean you’re progressive (as in SPMS).

Having said that, everyone’s MS “progresses”, anyway. It’s an often overlooked fact that even RRMS is progressive. It doesn’t mean: “Fine when not relapsing”, even though that may be true at first, for some people. But does your osteopath actually understand the difference between progression and a relapse? I very much doubt such subtle distinctions come under the umbrella of osteopathy. If you are in, or have recently had a relapse (which is implied by the fact your neuro wants to switch drugs), it is normal for your symptoms to be worse. It’s not necessarily “progression”, as there may still be complete or substantial recovery.

So I would put what he said from your mind - an osteopath is not the best authority on these things.

I’m not saying don’t use alternative therapies, if you find them helpful, but do bear in mind that these people are not qualified to make clinical judgements about MS!

Tina

x

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To add to Tinas’ comments, if your neurologist has you on DMDs, then s/he thinks you are RRMS not secondary progressive. And Tina is quite right, MS is a progressive condition. The efficacy of various DMDs for relapsing, remitting is not just about reduction of relapses, it’s also about slowing progression. I used to get confused and think this meant slowing down the time it takes to go from RR to SP, but it doesn’t. It’s about slowing the disability progression. Changing to secondary progressive is a different thing.

And of course the only view you should really take seriously is that of your neurologist, MS nurse etc. Not an osteopath, Chinese herbalist, chiropractor, snake oil salesman, or even us!

Sue

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hi tracey

tina and sue have addressed your concern about the word “progressing” so i will talk about tecfidera.

tecfidera, like the other DMDs, doesnt come on prescription.

your consultant will put you forward for it and once it has gone through the risk sharing scheme it will be delivered directly to your home.

i was on copaxone before and that was delivered direct as well.

you need to speak to your ms nurse about it.

he/she will advise you on the side effects and ways to stop them.

don’t worry, it’s a doddle once you get past the initial side effects.

carole x

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Hiya

The beauty of language eh?

Life is progressing-better then the alternative!

I have faith in my osteopath, as I do with gp and neuro BUT they all work together to help me. They don’t always agree and that includes me! But they all recognise the decision lies with me and for that I am grateful.

Ellie-take care of you!

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hi there tracy. im awaiting on copaxone next week after a nurse is coming to my home to take me through the ins and outs of it. i was told by my neurologist to stop taking tecfidera 4 weeks ago… can this be good to just stop the medication? think i may be having a mild relapse just now, but not sure if its the stress of christmas…hard to difine! only diagnosed in sep 2013. bit apprehensive about copaxone, though the nurse makes it a more attractive drug for RRms any information would be greatfully appreciated thank you. deborah.