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How long have you suffered ms and how are you fairing now?

Just wondered, for the newbies on here who are perhaps a wee bit frightened of what the future may bring, how long most people have suffered ms and how they are now and perhaps what they thought they would end up like?

Should make some interesting informative info for all msers.

Ive had ms now for 12 years and apart from slowing down considerably, blind in left eye and weak on right side, manage reasonably well. Definitely not what I expected, feared being in wheelchair straight away and all sorts of weird and wonderful things happening. Know we cannot predict our course but I do know quite a few oldies suffering ms - some in their 70/80/90’s. All attend our local ms group and all walk with sticks.

bren

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Hi Bren,

I’m only a youngster; diagnosed 40 years ago in 1973 at the Guildford Royal Surrey Hospital. I was in a wheelchair after 8 years and after 12 was thinking it will not be long before I’m brown bread.

Since then haven’t changed apart from age. So you newly diagnosed; MS is not a stop sign; its traffic humps; do not let anything stop your dreams or aims for the future; GO FOR IT.

George

7 years, more than likely 12 years, married and had daughter(3yr old)since,work 2.5 days/WK, speech slightly affected, r/arm poor, walk unaided about 100 yards as balance poor, some double vision,can drive again although cudnt for 3years with double vision,take meds for bladder but otherwise fine!!..seriously is manageable

Diagnosed 8 yrs ago but had ON previously 13 years ago and i suspect some strange symptoms take me back further than 13yrs.

No noticable progression. Went on dmd very soon after diagnosis.

At diagnosis had ON and balance probs/vertigo.

Have some symptoms but nothing has been permanent so far apart from the fatigue. Even though my ms cannot be seen - i feel ill most of the time.

Teresa.x

i was dx in 2008 and went on copaxone straightaway.

done fairly well (with moments of brilliance) and got to the gym at least twice a week.

my advice for newly diagnosed is to take care not to get bladder infections.

i’ve had about six since december and they really knocked me for six

carole x

diagnosed 12 years ago - probably had it for 15 years. Have had to slow down - balance is not as good as it once was (was never that great though, I was a very clumsy child). My feet have a permenant tingle and my knees are very stiff. I have the occasional muscle spasm and recently fatigue has reared its ugly head - but that could be that I’m fed up with snow we’ve had - seven months now!!

However I still manage to go Belly Dancing and was thinking of starting my Salsa again (no triple spins for me though). Its simply a matter of knowing your limits. I can’t walk for hours anymore but I know if I take occasional rests I am ok. I can go to the gym but running is out for me. Rowing machine, cross trainer and bike are ok cause I’m either sitting down or I have something to hold onto.

I would recommend that if you are capable of doing exercise then keep doing it. Even if its just a 10 minute walk that you normally wouldn’t do. But I do know that I am incredibly lucky that my MS is not as severe as most people, I’m not even on any medication.

Good luck to all those who have just been told. I know it will seem like a death sentence but it does not need to be. Talk to the people at the different societies and you will see hope everywhere.

Hi DX 10 years. Walking is a bit naff now but still work nearly full time hours. Some things I can’t do but can still do many of the things I did before. I thought things would be worse by now, Been on DMDs 10 years Neil

Hi Diagnosed July 2004… Mainly sensory symptoms up,until recently when I suffered two relapses in a shortspaceof time. Now have. Poor left leg…looking at getting a stick and applying for a blue badge. Also expecting to go on DMDs soon. As someone above said exercise is important even if its little and often. I can’t do running but can do bike and rower. Also do Pilates and yoga. Used to love more active things but that’s not possible now. However as long as I’m walking and my heads held high (usually depending on balance) I will fight this disease. And it definitely does not mean the end. I have a lovely hubbie and the best three year old ever ever who I will continue fighting for :slight_smile: x x x

was dianosed a yr ago the end of this march…wow a year already. anyway, had symptoms 9 yrs before and so far the things that have gone downhill are my legs, tiredness and toilet probs, apart from that its not as bad as what i thought it was going to be like, mind you saying that i dont know what i expected to happen apart from everything that had already happened over the yrs anyway, places like this helped more than just reading about it which is great, slowly learning to take one day at a time and not to push anything

Dx’d 15 months ago but had it for more than 6 - PPMS. Worse problems; walking,fatigue and bladder. Steady progression on all fronts - am waiting for that possible plateau. Still no sign of it though! Teresa xx

I have had ms for 22 years, first 13 years didnt have many problems much at all, a relapse every few years,then got back to normal,all changed 2005 after a big brain stem relapse, left me unable to do much at all, and am now secondary progressive with relapses,severe ones too, i was and still am positive about my ms,i stupidly thought my ms wouldnt affect me as bad as it has,i thought for some reason if i remained positive it wouldnt get to me.

jaki xx

I was diagnosed 4 years ago at my second relapse, first ever symptoms in December 2008. Went straight onto Rebif very soon after diagnosis. Had a third relapse in that first year and have only just had my fourth relapse.

My left thumb and first finger are always numb and left arm is always heavier than the right. Left hand goes numb if I overdo things. Toes are always tingly or numb and feet get pins and needles or numbness if I walk too far or get too tired. Muscle cramps can be a problem. Fatigue is constant, I have a sleep every day after work. I still work 30 hours pw at a school (admin) so get all school hols off which is a big help, I also do typing in the evenings on an ad hoc basis so sometimes an hour a night all week, sometimes nothing all week. I go to yoga and I walk to work (about a 5 min walk for fit people, takes me 15!) when I am well enough. Just bought myself a folding stick as I’ve seen sense and realised it helps when feet are numb and I stumble. Balance is often poor and bladder/bowel can be problematic. None of these are major problems and I’ve got used to them all. Hoping this relapse doesn’t leave me with too many additional problems.

Four years ago, I was worried my walking would be affected more permanently. That relapse took months for me to recover from and I also worried I would keep relapsing at that rate. I have been in much better health in the last 3 years than I thought would be the case. Sometimes, on a good day, I can even forget about the MS for a few hours …

Tracey x

Formal Dx 5 years ago but dx Probable MS 10 years agp so I have had it for 10 years but probably longer… strange things were happening 12-13 years ago.

Had problems with DMDs and was unable to take them so had a bad run of back to back relapses which left me quite disabled. Can furniture walk in the house but need a stick outside to get about 20 metres and use a scooter to go any more than that. Right sided weakness, horrendous fatigue that sees me in bed more than out, double vision, bladder stuff, severe heat intolerance, Trigeminal Neuralgia, spasms and usual tingles and pain. I had a course of chemo about 20 months ago and since then I have been stable (touch wood)

I have a carer come in every day to help me shower and to do meal prep for me and to shop, clean and do laundry etc but I still work part time (from home). I am a single mum and I am actively involved in politics and environmental issues. So even though I am fairly (very?) disabled I do still enjoy my life. Like everything I guess MS is what you make of it. I am a stubborn git and just keep plugging on. Only got the one life, might as well enjoy it

Was it what I thought MS would be? Well, to be honest, yeah but only because my very first relapse was a doozy and I was in a wheelchair and in rehab for 8 weeks having to earn to walk again so I had this idea that this was what MS could do to me… And it did. I always had very severe motor relapses from the start so it wasn’t great for a prognosis from Day 1 but c’est la vie…

B

I was diagnosed in 1999, mainly because my husband (of 1 year) thought my walking was odd - fine on the flat, not good on anything vaguely hilly. I also had something I now realise was a relapse that year. I had an MRI and a probable diagnosis straight away. Deteriorated a bit over the next seven years, but didn’t have any more relapses. I was offered interferons in 2006 but turned them down on the grounds that I wasn’t having relapses and they didn’t slow progression.

I had my second relapse in 2007 and my walking deteriorated a lot - I could no longer walk the mile to my child’s school and got a tricycle so I could bike there safely with my toddler in a seat on the back. I had another relapse the next year, a couple the next year and then went to three a year. During the relapses my walking got very bad, also my bladder control and I would be extremely tired. After the relapses, the tiredness would go and my walking and bladder control would get a bit better but not back to where they had been. I also had muscle spasms in my legs at night, not particularly associated with the relapses. I started using a stick in 2010. I went back to a bicycle when my youngest was old enough to cycle on his own and have cycled almost every day since. I now have a bike with a motor to help me get going but try to do as much under my own steam as possible - I am sure that exercising as much as you can slows down deterioration.

I started taking clomazepan for the muscle spasms in 2011 and have tried various drugs for the bladder problems, I’m on Vesicare at the moment which helps but not enough. I went on Tysabri in September 2011, during a relapse and have probably had another two relapses in the eighteen months I’ve been on it. I went through a very bad patch in September-October 2012, when I needed two sticks to walk, was really struggling to get my feet on the pedals to cycle and was sleeping several times in the day. I started on Fampyra in November 2012 and, within days, saw improvements in my walking, cycling and how much I needed to sleep. So now I’m back to a place where I’m coping, looking after my children and the house, seeing my friends, being a governor at my child’s school. I don’t feel confident about the future and am waiting for an appointment to talk about estriol, a hormone they are testing for women with MS in the US.

I have tried lots of alternative therapies - accupuncture, Swank diet, Best odds diet, cannabis, LDN, helminths (that’s worms that burrow through your skin and live in your gut) - all of them for at least a year, some for several years. It never felt like any of them helped.

This is quite a tricky one. Officially diagnosed only 2.5 years, but think I’ve had it considerably longer. 5-6 years, at least, but possibly decades. Looking back, I think my health was questionable in my 20s (diagnosed in my 40s), but it was nothing very definite, that you could really say something was wrong.

I’m still not visibly disabled (don’t use any aids or devices), but quality of life is noticeably poorer these days - mostly due to pain and fatigue, rather than outright disability. It’s not so much physical inability to do things, but gradually finding them more daunting and draining, to the point I’d often rather not bother.

I’m hoping to get my pain (from spasticity) better controlled - awaiting guidance from the GP. Because I think pain by itself has a very big effect on how positive you are about everyday life, and how much energy you have. I think my struggles with pain could be contributing to how fatigued I am.

Tina

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Hi

I was dx with SPMS in 2006. I had ON in 2003 and probably had minor stuff going on before then. It was deterioration in my walking that led to the dx.

My MS does what it says on the label: progresses. My walking has slowly and steadily got worse. I have gone from recreationally walking about 8 miles at the weekend to a few metres with a stick outside and furniture walking round the house. My bladder is also not to be trusted., it has improved considerably with Vesicare. The MS is also starting to affect my hands/arms so my writing is becoming increasingly illegible and I frequently drop things.

However, I am reasonably OK in myself and have a good quality of life. I do try to get as much exercise as I can, gym twice a week, physio exercises every day, yoga occasionally, and I try to stay positive by finding things to do sitting on my backside. I have started to learn the piano, to keep the brain active (hopefully!) and to help with manual dexterity.

MS is a slippery customer, I am still waiting to plateau but anything is possible with the bggr. I try and stay positive, learning to live with uncertainty has been my biggest personal development opportunity

Anne x

Hi

I was diagnosed 18 mths ago but had symptoms for at least two years before that .I have bladder problems and issues with balance my MS is progressive rather than relapsing but its a very slow progressionso far .I manage around home without any extra help and just use my daughters buggy for stability when out and about.

Fatigue is a problem but I am unsure as to how much of thats due to MS and how much is due to being pregnant again so quickly.

Ellie x

Bren I started having problems in May 2006 it really kicked off around the end of July 2006 I guess I was lucky that I got diagnosed in September 2006 I got on a injectable DMD by December of that year but it done nothing for me I was relapsing every 4 or 5 weeks I was told I had aggressive RRMS and by July 2008 I was in a wheelchair and had only the use of my upper left side and needed alot of care but thankfully Tysabri became available and I got on that in August 2008 I haven’t relapsed since and I’m out of a wheelchair walking with crutches by December of that year and by March 2009 I didn’t even need those, I can go to the gym and work out I’m stronger and fitter then I ever was and I’m 8 stone lighter. I know how lucky I am and I’m so thankful for it the treatment works well for me.

Mark.

14 years since dx here. My MS was pretty aggressive from the start (so at least it was not hard to spot and I was dx very quickly). Started Avonex as soon as I could, and that quietened things down pretty well for years with relapses rare and mild, mostly. Then the MS changed up a gear or two and became very active, so I started Tysabri. No relapses to speak of in the 2 years I have been on it. Right from the start, I never made complete recovery from relapses, so minimising those has been the priority for me because they have all left some disability. I can walk short distances unaided and still manage a mile or more with 2 hiking poles to help. My favourite holiday activity of country walks and getting as far from the beaten track as possible is a thing of the past, alas. Manual dexterity is rubbish, so handwriting writing and sewing etc are not much good. Fatigue is a bugger, but I don’t work any more, so that is easier to manage now. Luckily my eyes have recovered better from relapses than the rest of me, thank Heavens. On a good day, you would look at me and not know I had MS, although you might suspect I had poured gin on my cornflakes, because I drop things and bump into stuff a lot. My MS has been alarmingly and frighteningly active, and from that point of view if I had looked forward 14 years back in 1999 the news would not have been good. But in terms of disability, I think I would have been relieved to know that things would be as good as they are on 26 March 2013. But that’s today. If MS has taught me anything, it is not to take anything for granted for a single moment, but to enjoy each of those moments to the max. Alison x

Diagnosed at 17, I am now 44. I am still mobile, but I have to use a stick when I am in the village or elsewhere. I don’t need a stick indoors. My stamina just insn’t as good as it used to be either. I used to walk for hours, but now half an hour with the dog is enough.

Best wishes everyone.

Moira