Forum

Decisions to make

Hi, Not posted before but have been looking at various posts which i think will be of use. I have been DX since 1986 and apart from irregular episodes treated with steriods i have managed quite well. Having been offered early retirement from work i took it and now do a lot from home in a volunteer basis.Last two years have been a stressful on with a lot of personal and family matters that caused a lot of worry and stress. Unsure if releted but then had 4 relapses in this two years. the last one leaving me very weak on right leg- to the point unable to walk much at all and needing walking poles when i did. this went on for a while. I have now been referred by by neurologist for starting DMD and have had a first visit by my MD nurse showing me the main ones injections etc.I big step to take so taking it all in and researching loads first ( have DVDs to watch leaflets etc ) and of course will be looking at posts on here.I myself am one who does not like taking too much medication. Since this relapse I have started exercises and just now did a small walk to post a letter- no sticks!! I go to physio and i am looking at Tai chi froma DVD my son sent me. I now this is something i need to get my head around and not sure i want to start drugs at this stage but only i can make that decsion but others on here will probably understand more than someone without MS. Monday is physio. i will see what exercises they recommend. I intend to try just a small walk each day.I am thinking i will see what happens and IF i have another relapse then look at drugs…unsure… just do not know…am i being silly not looking at starting these drugs which i understand cut down relapses by a third or shall i take myy time and see how things progress ???

bump!

I’m not on DMDs as likely ppms so can’t help you but your post randomly appears to have missed the first few pages… so bumped up and hopefully you’ll get some answers

Sonia x

I think that what often isn’t made clear is what DMDs actually do. They are to reduce the frequency and severity of future relapses. That’s all, they will do nothing for anything that has already happened. So waiting till after the next relapse is kind of missing the point as that is what you want to avoid. You’ve already seen that damage can happen to your leg, and just don’t know what havoc that next relapse will cause.

I couldn’t wait to get started on Betaferon because I was having relapses every couple of months, loads of steroids which wasn’t ideal and of course a little bit of noticeable progession with every episode. Now it’s less than one a year, hardly any steroids and back at work within a couple of weeks. An injection is a small price to pay for that.

A good diet and exercise and reducing stress is healthy for anyone but don’t underestimate MS - it’s a big one and if it wants to floor you, it will, whatever you do. Someone with MS once said to me years ago, never underestimate the ability to move.

You’re right to say you might not have another relapse but that is just wishful thinking. Do you really want to take the risk? It’s not called ‘relapsing’ remitting MS for nothing. And we are so lucky now to have these choices of treatment.

Wishing you the very best of luck with whatever you decide to do.

It does seem that your RRMS is getting pretty lively. This is very disappointing for you after a long spell of things having been fairly quiet, and I am sure that it is all a bit of a shock to the system, and not a nice one. Nevertheless, having active RRMS is the situation you are in now, sad to say. It seems to me that the situation now is no different to how it would have been if your MS had got active on you 10 or 15 years ago - nasty relapses are just as nasty now as they would have been then, and just as worth avoiding, it seems to me. Your MS has just upped its game: I think you need to do the same.

I think that Val sums things up very well in her reply and I completely agree with her.

Good luck with your decision.

Alison

I can understand the desire not to take drugs. And it’s difficult to quantify– if you take them and don’t relapse – is that because of the drugs or would it have been like that anyway? However as someone for whom there are no drugs (SP) I think that I would air on the side of the drugs if I were given a choice. If you were diabetic you wouldn’t question the need to take insulin or epileptic the anti seizure drugs. I think you should do everything you can to enhance the likelihood of future success. I was dx in 85 and mooched along quite nicely until SP hit me like a sledgehammer. You can’t look at “now” and think it will define the future – no mater how much exercise and healthy living you do.

Jane

l have had MS for 31yrs - 1982 - but mine has been SPMS all that time - so never had the chance of taking DMD’s. The response has always been - You have the wrong type of MS- or You have had it too long. The latter l agree with. So apart from the usual - High dose Vit d3/magnesium/B12 - l take LDN - which has helped me quite a lot. And Sativex for muscle pain. l am sure once you have read all the info on dmd’s you will come to understand the pro’s and cons. Do keep exercising - Yoga/Pilates/Tai Chi all good for core-strength/balance/ flexibility. And swimming - as this does not harm your knees. My OH - had a brain tumour and was treated with a high dose of steroids for a long period. He then became diabetic - steroid induced diabetes - type 1. He swims twice daily at local pool - 100 lengths a day. And this has meant he has been able to reduce his insulin down dramatically. Made a big difference to him. And l am kept busy - washing all the towels!!!

I’m not keen on taking lots of medication either unless it’s absolutely necessary but I think in the case of MS it is crucial to take DMDs as soon as you are offered them. There is always the possibility that a relapse will leave residual damage so the chance to take a medication that can reduce the severity and frequency of relapses was a no brainer for me. MS is so unpredictable and for me it felt good to be doing something positive against the MS. I was diagnosed following two relapses within three months so was very keen to prevent further relapses.

It’s a long hard slog to get back to anything resembling normality after each disabling relapse for me so if I am offered anything that reduces these then I’ll grab it with both hands. I’m currently (impatiently) waiting to switch to Gilenya as my former DMD is no longer working for me. I have no regrets though as it kept me relapse free for 3.5 years.

By all means, keep up with the exercise. I regained my mobility (although nowhere near as good as it was) after this year’s relapses by doing yoga (I wasn’t prepared to hang around for physio) so I know how much it helps. However, if your neuro is recommending DMDs it’s because your MS is active and needs slowing down.

Tracey x

Hi Jane,

Gosh, you`ve had MS since 1986…but presumably longer, before you got your diagnosis!

I admire your attitude after all this time. Youve coped though very difficult times, Im sure.

I havent had DMDs, as they arent appropriate for my condition (which isnt MS…although it was thought I had PPMS for some years), but others have advised you well.

As an onlooker, I would give DMDs a lot more thought and then if you feel they are right for you, give them a try…if they do keep relapses away, then great!

Good luck.

luv Pollx