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confused

Yet again, sorry for the questions but am still really unsure as to what my last mri scan results really mean. Maybe I am looking for too many definite answers to which I am possibly guilty of and I know there is no same for every mser so to speak so should know better.

My ms nurse said there was no new lesions and no sign of ms activity in the last year and although she did not say fully she agrees with me not starting dmds yet she said she understands why.

I have been diagnosed since 2009 and have not that I am aware of had any relapses. My mum had ms and was very progressive and I along with my sister cared for mum so I am fully aware of ms and its impact and I know I have been very fortunate.

I feel very cheeky asking again but although I am not on a lot I do pop in and out and know that you guys are very good and helpful.

Not really sure what I am asking so please excuse my rabble.

Best wishes to you all.

Marydan x

Hi Mary, firstly…you need never apologise for asking questions here. That’s why this forum exists…to help and support everyone who needs it.

I’m not sure what you’re asking…is it about why you aren’t on any dmds?

Also, have I got it right, that you have RRMS! And you’ve had no relapses for a long time?

Hopefully you will get more useful replies than mine.

Pollx

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hi marydan

it is your decision whether or not to have dmds.

i had copaxone when first diagnosed and have switched to tecfidera.

it’s a catch 22 situation because i don’t know if i would have been worse, better or the same if i hadnt had any.

i do like the idea that tecfidera reduces the chances of relapses by about 50%.

good luck with your decision

carole x

Thank you so much for your kind replies. Yes I was diagnosed in 2007 with rrms and as yet have not had any relapses I can say. I know I am very fortunate and have been offered dmd in the past but no longer sure if that is still the case as the latest scan showed no new lesions or activity but will talk again with my ms nurse who is very good in getting back to any queries I have. i do not have my neuro appt until October. I suppose what I am asking is a question no-one can really answer and that is should I leave all alone or start dmd. Thanks again, Marydan

I always think why poke the hornets nest lol. If your MS is nice and quiet well you might as well leave it alone. I think what your MS nurse is saying is, when the time comes and you show activity then the drugs will help, but for now, if there is no activity then there is nothing to slow down, if that makes any sense.

Funny enough my neuro did say to me when i finally got diagnosed that there are so many different forms of MS, some people get diagnosed and never have any progression for years and years, so perhaps your just one of the lucky ones. xx

Thank you Crazy Chick for your reply. It makes a lot of sense. Take care xx

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One way to look at DMDs would be as an insurance policy. The NHS kindly picks up the bill for the premium, you do your bit by taking a pill/sticking a needle in your leg, or whatever, and in return you buy yourself a better chance of dodging nasty surprises that MS might be loading up for you. Of course, you will never know whether you have dodged a bullet, or several, or none.

In other ways I am very much an ‘if it ain’t broke, don’t fix it’ person. But in this case you know already that it’s broke - you have MS. None of us can see into the future and no one can tell for sure what is for the best - it’s all about managing risk as best we can and being comfortable with whatever we decide to do, recognising that there are no certainties and no 100% right answers.

Good luck with whatever you decide.

Alison