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Discussion with MS nurse

Hi All

I am looking for some of advice of what I should be looking to ask the MS nurse for which I have an appointment with this week.I was diagnosed a few weeks ago with RRMS and am still quite active with running cycling and in the gym.I would like to carry on with the fitness regime to reduce the symptoms but feel she will be looking to put me on medication. Any advice will be appreciated.

Hi Daza

Obviously, as you’ve said, the MS nurse will probably want to discuss the possibility of you starting a disease modifying drug (DMD). It might help to have a look at the various options: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

However, if you feel that you don’t at this point want to take a DMD, then it’s entirely your decision. The nurse can’t just make the decision for you. Clearly, they all have an element of side effects, so it’s a matter of balancing the positives (ie relapse reduction rate) with the negative (side effects). If you feel that the potential positives aren’t worth the negatives, then just say so. There’s no reason why you can’t change your mine later.

It’s brilliant that you’re keeping yourself so fit. And that wil absolutely pay real dividends, no matter what MS throws at you. Keeping a good core as well as strength and stamina will be possibly the best thing you can do.

So, in your situation, I’d have a look at the various drugs, discuss with your family and/or friends, and make your own decision about DMDs.There are other things you can incorporate into your life, like high dose vitamin D and B12. So you could ask the nurse about these.

Sue

Hi Daza Sorry to hear of your recent diagnosis. I was diagnosed RRMS last year. My symptoms are mild to non-existent (occasional numb toes). I lead a very active life - busy full time job in the city, gym every day at least once (mixture of classes (boxing, combat, pump, HIIT circuits and yoga), personal training sessions and resistance), am a regular at parkrun (if a very slow one!) and love hiking. When I was first diagnosed I wasn’t sure whether I was allowed or it was recommended to keep this up. i was told to avoid over heating and over tiring myself by a rather old fashioned MS nurse. My neuro was much more reassuring - exercise is good for mind, body and soul - and will help your resilience if you do suffer attacks/ progression. Listen to your body and do what you can while you can - which is his advice for everyone regardless of whether they have MS. DMDs are something I see as helping me stay as well as possible for as long as possible - and I pushed to jump in with both feet into the deep end with lemtrada as my first DMD. I’m two months post R2 and currently sat on a train in very sweaty gym gear on the way home after a very good circuits class. Back to the strength and speed I was at before R2. My last MRI showed I’d received no new lesions over the last year - and I’ve not had any relapses. Whether this is chance, lemtrada or exercise I’ll never know - but I feel by combining life style choices and heavy drugs (!) I’m giving myself the best chance of keeping the monster at bay. Apologies - that’s a lot of waffle. Hope some of it helps. Very happy to answer questions on my approach to DMDs if helpful. K

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I suggest you try recasting that from: ‘I would like to carry on the fitness regime… but…’ to ‘I would like to carry on the fitness regime… and…’

The better your MS is controlled, the more you can do in the gym. It isn’t an ‘either/or’ on fitness and DMDs: it’s an ‘as well as’. If you want to look after your fitness, DMDs are your friend. Make no mistake: it is uncontrolled MS that is your enemy.

Alison

Hi Daza I have my first appointment with my MS nurse this morning after my diagnosis a few weeks ago. I’ve got a list of questions that I’ve added to as things have come to me. I’ve also scribbled out a pro and con list for the two DMDs I’m deciding between. I’m not sure why but I’m really nervous! x

Hi Wobblynic

Hope things go well for you and you get the answers you are looking for.I also have a few questions to ask on Thursday

darren

Hi All

thanks for all the comments and will take these on board when I see the MS nurse tomorrow

Darren