Forum

Progress of M.S.

Hi everyone, I am a little confused (nothing new there). When Rachael was diagnosed I was told by M.S. nurse that as M.S. is particular to each and every person who has it there is no way to determine how Rachael’s M.S. would pan out. He was very encouraging about her future life, work, family and friends i.e. she could get a job, could have a family of her own, go out with friends, she would take the drugs and hopefully they would work and she would only need to be seen every 3 months to check her bloods and she could go away and make a few adjustments once she was over the present relapse and life would go on. I was very scared and upset and read everything I could get my hands on, from worst case scenarios such as being in a wheelchair to best case scenarios, living life and not having any or few symptoms. On reading these forums from people who actually live with this disease day in day out it would appear that this disease does follow a pattern of sorts. I have read about people progressing to spms to pms and not being able to swallow to not being able to eat solid food and the way they talk about this is that it is inevitable. At the moment I have an awful feeling of foreboding in my stomach, it feels like a lead weight. You know that feeling when you think something really bad is about to happen, I have that all the time just now and it keeps taking my breath away. Is it all inevitable? Is her future bleak? Linda x

No Linda, it is NOT inevitable that all those nasty things will happen to Rachel.

I think what`s going on in your head (and tummy) is very typical of how us mums think!

We want to wrap our children in cotton wool and save them from all the horrible things in life.

I know that`s true of me. Both my daughters, now 40 and 35, have had bad marriages, gone through divorces, moved back in with us and needed us to assure them that life will come good again…and it has. But that doesnt stop us worrying about them.

now I do know that it is different for your girl. But even so, reading too much info isnt helping…obviously.

But she CAN and with your help, still have a good life. Allow her to do what other girls her age do. try to enthuse about the good things and not over dramatise the not so good.

I know I dont actually have MS, but another nasty disabling condition, but I was mis-diagnosed with PPMS for a long time, so I learnt a lot about it.

All those wickedly awful severe symptoms of MS do happen, but not so commonly.

Please do try to ease up on reading stuff. Do you think a chat with your GP about your fears, would help?

luv Pollx

Linda,

I’ve had this for 12 years and still exercise and go out with friends. The only thing I don’t do so much now is drink alcohol - which is great for my frineds on nights out cause I am the designated driver. I do have problems swallowing but as long as I take a sip of water with each mouthful I am fine - thats my solution but it might not work for someone else. thats what makes the whole MS thing so personal. And even if the symptoms are the same the solution to work around them might not be.

There is no guarantee that your daughter will get worse and send up in a wheelchair unable to look after herself and there is no guarantee that she will never have a relapse. And if you make yourself sick with worry it will make your daughter feel worse. Live one day at a time, Linda, and deal with problems when and if they arise. Thats all any of us can do.

Take care and try not to scare yourself with all the reading

Kelly x

Hi Linda

I have has this since 2005 and I still get up and wouldn’t be seen without my lippy and mascara etc etc. It’s taking more makeup these days mind. I meet with my friends very often and still go caravanning many times a year. I have a wonderful family life and I will always remember what my neuro told me at d/x. MS is not going to kill you and I always keep that it mind. I walk with a stick but it is a blinged up one and I wear an eye patch sometimes but this has diamontes on it.

Poll and Kelly make perfect sense. Try to stop reading up on the MS as Rachael may not get all of what you are reading. I promise you after 8 years of living with the disease I have not stopped doing anything that I loved to do prior to d/x. If anything, it has made me a stronger person.

Take care and try and stop worrying. MS is not a death sentence. Promise!!

Take care.

Shazzie xx

[quote=“Rachaelsmum”]

Hi everyone, I am a little confused (nothing new there). When Rachael was diagnosed I was told by M.S. nurse that as M.S. is particular to each and every person who has it there is no way to determine how Rachael’s M.S. would pan out. He was very encouraging about her future life, work, family and friends i.e. she could get a job, could have a family of her own, go out with friends, she would take the drugs and hopefully they would work and she would only need to be seen every 3 months to check her bloods and she could go away and make a few adjustments once she was over the present relapse and life would go on. I was very scared and upset and read everything I could get my hands on, from worst case scenarios such as being in a wheelchair to best case scenarios, living life and not having any or few symptoms. On reading these forums from people who actually live with this disease day in day out it would appear that this disease does follow a pattern of sorts. I have read about people progressing to spms to pms and not being able to swallow to not being able to eat solid food and the way they talk about this is that it is inevitable. At the moment I have an awful feeling of foreboding in my stomach, it feels like a lead weight. You know that feeling when you think something really bad is about to happen, I have that all the time just now and it keeps taking my breath away. Is it all inevitable? Is her future bleak? Linda x

[/quote] Hello rachels mum how old is rachel? husband has been diagnosed with ms but they too are waiting to see what type as unsure at momment he too has developed speech and swallowing problems and is waiting to see speech therapist.He still has all previous symptoms as well as having uveitis and registered as severly sight impaired from 8th august 2013.We worry about future hubby 47yrs and have two little children aged 5 and 7 yrs lifes hard and cruel.Neurologist said he didnt think multiple sclerosis was active at momment but symptoms like said are still there.Neurologist told hubby he had many old lesions going through whole of brain and spine lesions to.Been to gp who prescribed amitriptyline taking 50mg daily at night but not helping with moods or sleeping or pain in fact husband says he doesnt think they are doing anything.He had similar problems with other medication was on immune supressants but they didnt help either these were prescribed for his uveitis which is chronic.They are talking about putting him on immune supressants again but we do not hold out any hope of them working as already tryed before. xx julie

Hi Rachels Mum,

The posts on this forum are a bit skewed – well, a lot skewed actually. For every post about wheelchairs and bladders etc there are probably 10 or more people with MS out there just getting on with life never looking at this forum! I had MS for 15 years before I ever looked here. I don’t want to add to your progress data but yes I am one of those who went Secondary Progressive and is now in a wheelchair. BUT there were no DMD when I was diagnosed in 1995 and I am just one – how many more people who were dx in 95 are just too damn busy to be sitting at the computer on a sunny Sunday afternoon?

My ex husband always said that my dx was worst for him than me. Although it was an insensitive thing for him to say I can understand as a Mum how hard it must be. But you must try hard to cast off that feeling. Life is about NOW. Try not to use energy looking ahead to a future you cannot possibly predict.

I tried to make a list of all the things I have done since I got MS and they include

-living in America for a while
-starting my own business
-training as an advisor

I could go on – but you get the idea – MS or not life goes on.

Jane

Hi everyone, thanks for replies. Julie, Rachael is 16, only 16. I just feel so hopless and scared. I have been reading sites I maybe should not have. One in particular scared the bejesus out of me and stopped me sleeping and has me crying all day (not in front of Rachael, she has been in bed all day). It says there are many myths surrounding the progress of M.S. One being there are several types of M.S. It says there is really only M.S. and it’s different stages which most people will go through just with different degrees of severity. It also says, and this is the biggy, that although M.S. is not terminal people do die considerably earlier than those without the disease, and that 56% actually die from M.S. My heart is racing, I feel sick, my stomach is churning and have cried all day. I am so very very scared and can’t seem to pull myself back from the edge. What do I do now with this information? Linda x

Have we made you feel any better hun?

pollxx

From everything I’ve read, I’m almost certain that the 56% you read is wrong. It is very rare to die of MS and it is not regarding as a terminal illness. I think there is a theoretical small reduction in average lifespan (around 5 years) but this is not to say everyone does die earlier. You do tend to hear the worst, in the news you only ever seem to hear of MS connected with suicides, right to die cases, etc. rather than about the thousands and thousands that you just wouldn’t know had it to look at them.

Not everyone with relapsing MS goes on to progressive, although I think a lot do eventually. But the eventually can take years and years. And you can live an awful lot in between rather than just waiting for some not-at-all-inevitable worst-case scenario.

Stick to sites like this on, or the MS Trust, or MS-UK for information and stop googling so much. I think maybe you would benefit from ringing the helpline to talk through things - freephone 0808 800 8000.

For me, my MS started in 1999, I am still mobile (no stick or any aids), I work (full-time until this year), have had two daughters, we go camping regularly. I am this year starting to find I have to take things a little slower - not to say I am not doing the things I want, just pacing myself more sensibly. This year I have roller skated, cycled. During a relapse it seems everything is over, but they pass and it gets better.

Hi Linda

It is reckoned that ms knocks 15 years off life expectancy. Now that ain’t so bad when you think about how much longer people are living nowadays. Anyway I don’t know how reliable the info is.

People don’t die from ms, they can die from complications due to it. (heart, kidneys etc)

Rachael needs to be aware of healthy lifestyle choices. As her mum you would want her to have this anyway.

Stop worrying and stop reading up on it to such an obsessive extent.

Take care of yourself for rachael’s sake.

Carole x

MS is not a terminal disease Linda.

Rachael will find ways to control the sumptoms of her MS, as we all have, to live life to the full.

For example if I get hot my ON will worsen until I cool down and then it settles down, so I make sure that I stay close to my fan on hot days.

I have to use my catheter regularly so that my bladder doesn’t play up. If I didn’t do these things then my MS would affect me more.

Please try and stop worrying. I am sure that Rachael will adapt.

I do understand your fears but don’t worry. I am a mother of two sons and I would die for them so I do know how you must feel.

Hope we’ve helped to reassure you.

Shazzie xx

Thanks again. Will try to take deep breaths and calm down. I am on hyper alert all the time and I think it is taking it’s toll on me. I will also try to stop the googling, if someone I knew was doing this I would certainly be telling them to stop, that information on the internet is not always accurate and sometimes downright wrong. Thanks Linda x

There you go Linda. You have said it yourself!! Well done you!

Try and smile your way through it for your sake as well as Rachaels. And remember, we are always here whenever you need any real life advice from people who know.

Take care.

Shazzie xx

Hi Linda,

Life expectancy is slightly less with MS, but I wouldn’t say considerably so. Quite old data reckoned 5-7 years off, but with treatments improving all the time (not just treatments of MS itself, but control of infections etc.) that gap is likely to be narrowing all the time.

It’s certainly not incompatible with living to a ripe old age. My great aunt lived to 87 with it, and as far as anyone still living can recall, didn’t use a wheelchair until her last months.

She probably DID eventually die of some complication of the disease, but at 87, you’d hardly call it a premature death, would you? She’d probably outlived many of her supposedly healthy peers.

I do think, for your daughter’s sake, if not your own, you need to try to stop catastrophizing (not sure there is such a word!) about her illness. I’m sorry, but a parent who’s convinced helplessness and early death are “inevitable” can’t be helping. It’s not a constructive approach, and doesn’t reflect the facts.

I suggest you speak to your GP, and see if you can get referred for counselling - preferably not just general counselling, but specifically about MS. Alternatively, I think many MS therapy centres (don’t know if there is one near you) offer counselling, not just to patients, but to affected relatives.

Of course it’s not wrong to be afraid, but you do need to get some control of your fears, and realise they are just that: the future is NOT written; nothing is inevitable.

And I think I agree with other posters maybe to lay off the reading, as it doesn’t seem to be helping. Yes, you will read harrowing stories, but as has already been pointed out, people generally turn to the internet to discuss problems - not when everything’s fine. Thus if people are happy and doing well, you’re probably not going to see a post from them telling you so.

If you must read, then make sure it’s reputable, scientifically-based information (including what’s available elsewhere on this site, and places like the MS Trust) - NOT crank sites that try to tell you you’ve been duped about MS, and everything the neurologists tell you is wrong. There’s plenty of conspiracy stuff on the internet, but you don’t need any of it. Be discerning about what you’re reading; just because somebody wrote it doesn’t make it true.

I was diagnosed almost three years ago. I know that’s still early days in comparison with many here, but I reckon I had it donkeys’ years before that, and just ignored my symptoms, or attributed them to something else.

If I’m really honest, I do know I’m not well, and haven’t the vitality, strength, or stamina that even a 47-year-old woman is still reasonably entitled to expect. Nevertheless, if you stood next to me in the supermarket, I’m sure you wouldn’t guess. I’m regularly mistaken for much younger than I am (by ten years or more), and people are absolutely flabbergasted when they learn I’m ill.

I live alone, in a house with stairs. I dress, shop, feed myself, and do all the usual stuff, and until recently worked full time (I was made redundant with over 600 others - nothing to do with MS).

I’ve never been in hospital with MS - except the usual routine outpatients appointments - and I never took a day off work with it. The last time I was off work was with a cold (which admittedly tend to be worse on top of MS).

Hope this helps,

Tina

x

Hi Linda

Just to reiterate what has already been said. MS does not follow a prescribed course for every patient. If it did, it would be so much easier for neurologists. As it is, if any of us ask our neurologists what our future holds, they tell us they cannot predict the course of MS as it is so variable and it is different for every patient. If you don’t believe it, ask Rachael’s neuro and see what the answer is.

Now for my personal story -

I was diagnosed 4 years ago, totally out of the blue. I had two significant relapses within the space of three months and I was in hospital for both. The first time I think my family suspected a stroke as I had slurred speech and was unable to write properly. My mouth was drooping at one side and I was dribbling (very attractive). I recovered within a month without treatment but tests showed I had had an episode of demylineation.

Three months later, my feet went numb. By the time I saw the neuro a week later he admitted me as I was numb from the waist down, my feet were totally numb, I had the ‘hug’ and I could barely walk as I had seized up. I had IV steroids and was diagnosed. I had a further relapse that year but after starting on Rebif I have been remarkably well since.

I am 48 years old and I still work 30 hours pw, still drive, take holidays, party, socialise etc. In short, I lead a fairly normal life. I do have to rest a bit more than a ‘healthy’ person but that’s about the only difference. In fact, until my most recent relapse you wouldn’t have known there was anything wrong with me. I now use a stick but I am still hopeful that I will improve further when I finally see the physio (that’s another story!).

I certainly don’t sit around worrying about when the next relapse will hit or how soon I will end up in a wheelchair. I take each day as it comes and am grateful for what I can still do. If anything MS has made me realise how much I do have to be thankful for; I will never again take walking or talking for granted.

I agree with Tina - I think you would benefit from talking to someone about these fears of yours so you can put them into perspective. Your daughter needs your support and quite a big part of that is positive thinking. Although you say you are doing your best to hide your true feelings from her, I bet she knows you have some misgivings when she is making plans for the future.

Tracey x

Hi Linda

I’m not surprised you’re worried, my Mum (also Linda) has been incredible but I hate being such a worry to her and I’m 43.

Truthfully, since I’ve been diagnosed, it turns out I only actually know one other person with ms - and more importantly, i had no idea whatsoever that she had MS!

I think a lot of the people on this forum are here because something has worried or bothered them, or they are new to it or worried about their symptoms or dmds. Lots of people with RRMS really are fine for massive amounts of time.

I’m sure there will be tough times as it’s not predictable but try to stay as positive as you can, stress is bad for anyone.

Take care

Sonia x

Hi Linda I just wanted to add another perspective. My daughter is nearly 3. When she was born she was diagnosed with a rare genetic condition. We were told she would die in days or weeks and if we were really really lucky a few months. The statistics were definite. Later our lovely paediatrician said “statistics can tell you what an average population might do, but they can never predict what will happen to am individual.” We have leant that it is each day that counts. If today is ok that’s what really matters, and in time you get to look ahead a bit more and relax. It’s completely understandable to worry about your daughter, as parents we worry about our children even if everything’s ok. And you have been given something which gives you more of a worry. I know completely how hard uncertainty is, but actually I am not minding my j certainty today, as we have just visited a friend whose 34 year old son died earlier this year in a tragic accident. I am sure my friend would swap her certainty for my/your uncertainty any day she was asked. None of us know what happens next, so try and focus on the now if you possibly can. And find something to look forward to- a trip away, a theatre trip, something fun to look forward to. NOT “while you still can” but BECAUSE you can. Xx

Hi, feeling a little more positive today. Think I was just having a bad day yesterday and allowed panic to overcome me. Most of the time I realise this is not the worst diagnosis to have been given as it was either M.S. or a brain tumour they thought she had at the beginning and I was praying for M.S. then. I know this may happen again and I will try to be more positive and not let it bring me so low. Thanks for all your replies and good advice. Hope you are all well today. Linda x

Hi, NO,NO,NO, you shouldn’t look at it that way, live for today, not tomorrow, bad things can happen tp anyone, stop worrying and enjoy life, Jean x x

Hi Linda

It is good to hear that you are feeling more positive. Hope we weren’t too hard on you. We do understand honestly!

Shazzie xx