Any advice?

Hi all I have had my letter from the neurologist telling me that I have MS. He said that I am to start phase 1 of DMTS. I. I really don’t have a clue apart from the stuff I have read on here. All help will be gratefully received Julie xx

I hope it was phrased more as an invitation to start, as opposed to a directive. Anyway…

Sorry to hear that you have received the same / similar news to the rest of us. Oh well. It is what it is and more importantly, you now know what it is. And so the battle can begin!

What does DMTS stand for? I am guessing you have the RRMS version of this bloody disease and so you can start popping pills / playing with needles on a regular basis?

Everyone is different and everyone’s preferences are different. For what it is worth, here are mine:

Daily regime: 4000UI Vitamin D; some Vit B12 (not sure how much; it’s just one pill for under the tongue) and TECFIDERA!

I also adhere to the Swank diet, which is essentially low to no saturated fats, but lots of white poultry and fish, with tons of fruit and veg.

But for you, a newbie at this stage of the game, the most vital thing to do, is to take your time getting your head around this new reality. Do not panic; it is not the end of the world and your future is as unpredictable and is as undefined as everybody else’s.

In many respects nothing in life has changed. You now just have the perfect excuse to indulge only the very best of things in life and none of the bullshit.

The very best of luck to you!

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Thank you. Who decides which one you take? xx

as with everything when regarding your treatment… YOU do! (You could refuse any and all, although personally, i do not subscribe to this notion.)

however, the type / aggressiveness of MS and the success / failure of drugs tried before, will dictate the choices your are provided with.

Hi Julze

And to help you consider the options open to you with regard to disease modifying drugs (DMDs), there’s a tool available on the MS Trust website: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid the MS Trust actually have a load of factsheets that could help you to navigate your way about the MS world.

Good luck with it all, don’t let the MS diagnosis freak you out too much. And use the community on here to help you. Someone will generally try to give you assistance with questions, worries and concerns.

Sue

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Hi Sue I did read that a few days ago. Still confused lol. I’m sure it will get easier xx

If you have an MS nurse, perhaps your best bet is to discuss the various treatment options with him/her.

Sue

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Haven’t got one yet. 4-6 weeks apparently xx

well julze if it’s going to be 4 - 6 weeks, that’s plenty time to read up on your choices.

my experience was originally choosing copaxone which is a sub cutaneous injection once daily.

i found it easy to fit into my day.

unfortunately i was unable to rotate the sites properly and ended up with lipotrophy (a dent in my arm).

then i switched to tecfidera and it’s great.

you can still ask questions but at least you’ll know what your nurse is talking about.

look on it as preparing to do battle and this bit is choosing your weapon!

good luck

carole x

I found this site to be indispensable in the weeks following my “hey at least its not cancer” meeting:

Fantastic xx