Hello All, I have this nagging question that I think about all the time - i know it’s a part of MS - The unknown. My symptoms started 8 years ago at age 26, and since then I’ve only ever had ‘sensory’ relapses … vision problems, l’hermittes, numbness (yeah my right hand has been numb for a year!). I made peace a while back about the possibility of having problems walking and incontinence in the future … but I wish I could be clearer on what the future holds. I have read that being diagnosed young, being a woman and having sensory symptoms are associated with a potentially less difficult disease path. And it’s been 8 years. I guess I’m just confused as to how much I should brace myself for a difficult road ahead? I suppose I’d really like to hear from anyone who had a pretty good run with MS like me, and then experienced more serious problems at a later stage. I think sometimes I’m fooling myself thinking that I will never have problems walking - it is so hard to imagine if it has never happened to you. Why haven’t doctors been able to better predict the disease course for people with MS? And does anyone know any more about how to really understand what the future holds? Aren’t there at least some decent statistics out there? Thanks in advance for any info/advice. I really like this forum, I’ve just been here a couple weeks now - you people are very nice! XXKK
I’ve heard the same things as you about the aspects of your MS that tend to be associated with a relatively OK disease course. Unfortunately, I think that’s about as good as it gets in terms of predicting the future. The unpredictable nature of MS and the impossibility of predicting the future are a big and important issue. I would stick my neck out and say that finding a way of dealing with this is one of the most important things that a person with MS can do to help him/herself. A lot of people (me included) try to concentrate - not always successfully! - on the here and now. It is futile to look too far ahead. Particularly when some of the worst fears might not happen. For instance, if you had spent the past 8 years poisoning your life with cripping, miserable anxiety about losing your mobility and your continence by 2011, that would have been 8 years wasted, wouldn’t it? 8 good years of life with all pleasure and enjoyment drained out of them because of dread of something that has not happened, and for what? It’s a truism to say that no-one knows what is round the corner, but it’s also true! You seem to have managed so far not to let your fears about the future poison your life. It think you have already given yourself a very good model of how to approach things. Most of us go through phases of how we deal with ms, psychologically, emotionally, every way. And I think that we find our own way (if we are lucky) of managing to look the future calmly in the face, acknowledge that we don’t know what it holds, and then get back to living our lives in the here and now, and getting the most of every day. Alison x
I think I am one of the types of people you describe. I was diagnosed in 1995 and had a more than a decade of relatively mild symptoms. About 18 months ago I went SP and now have all those problems that you fear - mobility, incontinence etc. However I can look back on those mild years and know that I lived life to the full. I’m not saying that I didn’t worry about the future now and again but it didn’t consume me. Nowadays I don’t feel any different in my heart I still do stuff, I still live a great life but I have just made adjustments to the way i do things. Honestly if you’d asked me 10 years ago if I’d be divorced I would have said you were a nutter but here I am 6 years on my own. Sh*t happens you just have to deal as best you can. Maybe this will never happen to you but if it does I promise it’s not the end of the world just an altered state. (I could worry about getting more disabled - but I don’t because what good would that do? )
Hi KK, The thing is to live in the here and now with ms, not to look back or forward,i had mild rrms for many years, and couldnt imagin been as bad as i am now, i wouldnt let myself think that far ahead, and for a lot with MS they stay mild, and live near normal lives,and dont progress that much, they are the lucky ones, i was lucky for the first 20 years of my ms, and i am so pleased i was i always said i would worry about it when i had to worry, i lived with ms, from the age of 17 and got diagnosed at 32, i always knew i had something wrong, but my symptoms came and went, and i didnt start looking for answers until i was 32,and its been from then that i had to slowly accept my MS,and i was also pleased i hadnt got diagnosed at 19 because if i had been, i dont think i would have had my children, knowing, what i know now, I have had some very bad times and still get very severe relapses , that leave me in bed for 4 months at a time, but i still think i am one of the lucky ones, as i get myself going again,after i have been knocked off my feet, i am 53 now and i can still stand up (most of the time) i have to use a wheelchair when i am out of the house,because i cant walk more than a few steps,but i think i am doing ok for the length of time i have had ms,and no its not easy, but it could be a lot worse, No one knows what the future holds,ms or no ms. jaki xx
The way I try to look at this is nobody’s future is certain. We are a bit different, in that we already know something is wrong. So we’re more aware than most that everything could change very quickly. But that’s true of other people too; they’re just not forced to think about it. Anybody fit and well today might have an accident, heart attack or stroke tomorrow - something they’d never suspected or planned for. Having MS today doesn’t mean that [insert favourite fear here] will certainly have materialised in five years, or ten, or twenty. Because it might not. Equally, being fit and well today, and NOT having MS or anything serious doesn’t guarantee future life, health, or happiness. It’s a lottery, basically (and I don’t mean that cynically or bitterly). You just have to make the best of whatever you get, because there’s no way of knowing. Tina
Hi kk, oh I think this is a thing i
ve found myself thinking on many occassions. But it is one we must try to keep control of. No-one, but no-one can give us a prognosis...and isnt that a good thing really? It would most probably be way wrong anyway. MS is a vast condition with millions of permutations, i reckon. Take a handful of us here, right down our symptoms, past and present and i
ll bet theres a huge myriad of findings. I
ve been on this journey for around 14 years now...not had the best of NHS help....by that I mean neuro-wise. Cant fault my GP, nurses, OTs, physios etc. Reckon I
ve had a pretty rough deal from the neuros..ie .dont know…shaking of the hand…puzzled brows…part dxd and wrong dxd. My path has been one of steady decline…had the wonderful support of my hubby. he get really cross with me if i say anything like, I
m fed up of this now…or…
Whats in store for me i wonder
...........and such like. I think he takes this as a slur on his efforts..which is totally wrong of course. If you can, my love, take a bit of his advice......don
t talk yourself into something which may never happen. he
s right, but with the type of person you and i are, its not always that simple, eh? Take care. luv Pollx.
Dear Wendles, Life with MS can be hard, enjoy today and don’t worry too much about the future. Most people with MS do not end up in a wheelchair. “The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why it is called the present.” Jacquie x
Oh I really like that…today is a gift…that`s why we call it the present…very profound…mind if I borrow it? luv Pollx
Hi KK, You’re asking questions that have no answers, but I think that everyone at some point has asked them. We keep getting told that there are wonderful things on the way for treating MS, but it still looks like the researchers/doctors are sitting on their hands, not doing much, which I’m sure they’re not. My symptoms started when I was 12, but wasn’t diagnosed until I was 28 - I’m 36 years old now, I walk with a stick, and have limited energy, but I know that I’m not that bad, as I’m sure you’ve heard before, everyone’s different. Try to live for today and not worry too much about what’s coming, nothing is certain, and worrying too much will only make you ill. Luisa x
Brace yourself for the future by making sure your finances are in order. Its all very well with people saying live for today and don’t worry about the future because you don’t know what it brings, but if you only live for today you could find yourself in shit street in the future. Look after yourself and make sure while you still have your mobility you exercise. Don’t wait for things to happen… plan ahead, anticipate any problems before they arise and deal with them.
Turtles Head wrote:
Brace yourself for the future by making sure your finances are in order. Its all very well with people saying live for today and don’t worry about the future because you don’t know what it brings, but if you only live for today you could find yourself in [deleted] street in the future. Look after yourself and make sure while you still have your mobility you exercise. Don’t wait for things to happen… plan ahead, anticipate any problems before they arise and deal with them.
Turtles Head is quite right of course - there’s a balance to be struck between accepting each day as a blessing as it comes and doing everything you can to stay in steady work with a good pension scheme that can pay out if it all goes pear-shaped! (Or whatever objectives suit you as ways of securing your financial future as best you can.) Trying to look ahead in that sort of practical way (a good thing) is a different matter from spending life sunk in misery at what might be round the corner (a bad thing.) Alison x
Thank you everyone for all of your replies. I really appreciate your sharing your stories, struggles, courage and I am feeling quite inspired. I like to think that I could handle anything that comes my way - you have to be positive right? I do try to make the best of every day, because although I do agree that everyone’s future is uncertain, I guess I feel like mine is more uncertain. I also agree that it’s important not to let your fears take over your life, but this last post (Turtles Head) is a smart one. For that reason I have chosen a career that works better for my MS (stable, flexible hours) and especially this year I have really gotten back to working my body. This was really after a string of bad attacks which I felt that if I were physically stronger I could have dealt with better. And I really appreciate hearing from those of you who had a good run and are having more challenges now, as it helps me to be realistic about the future. But of course today is a ‘present’ - how cute is that! You guys are so great, thanks so much. xxkk
I’m someone who had it really easy and then, suddenly, not so easy. I was diagnosed in 1997/1998. I had some not so nice stuff happen obviously, but in 2009 I was still competing internationally in taekwondo. 2010 was the beginning of a horrible 15 months and I am now unable to train, I use a stick and sometimes a chair. But boy did I have a good run! My advice to you would be to keep very fit and flexible, eat well, don’t smoke, drink a little most evenings but rarely a lot, rest when you need to. Look your fears straight in the eyes and acknowledge them, then put them behind you. They may never happen. And if they do, then know that you will have loads of support, meds, treatment, equipment, etc so that you will manage. And you will - manage. Yes, look after your finances and make sure you’ve got a decent pension if you can, but ENJOY your life and don’t worry about things that might never happen. Karen x