Forum

I've had MS for 20 years - how about you?

I didn’t know what to tag this - events? The event for me is that I suddenly realised I’ve had this disease for 20 years. I wasn’t aware of it for the first six of those, although the signs were there. Even once I was diagnosed, it didn’t make any difference to how I lived my life for the next seven years. Now, I seem to spend a lot of time accomodating the disease (all those medicines, the catheterising, the FES) or having to miss doing things. I can still do the things I really want but there are just tons of things I don’t do any more (secondary school parent teacher evenings, swimming, walking more than 50 metres … but I can live without these things).

I’m really interested to hear how long other people have had the disease and how they are now.

I think I’ve had it for about the same time although it wasn’t officially diagnosed until 2010! I was told all those years ago that my balance problems were due to an inner ear infection and that ’ it definitely wasn’t MS’ !!! Between then and now I had my two beautiful girls who are now approaching 17 and have pretty much lived a normal life. I’ve been starting to get cognitive problems though for the last couple of years and because my job is SOOOO demanding ( I am a criminal lawyer) I have decided to apply for ill health retirement. My neuro says that the stress of the job is making things worse and I’m not prepared to accelerate this illness for the sake of work. He is supporting me and I’m just hoping that I’m successful coz I really don’t want to walk away from a 22 year career with nothing. I feel very fortunate all in all and hope that my relative good health continues once work is taken out of the equation.

Hi,

I was diagnosed in 2009. My neurologist said I must have had MS for some time because of the progression shown up in the MRI scans. To be honest I had not had any symptom up to then aside from fatigue that could have been attributed to MS. I went downhill quickly but this seems to have plateaued out since I was given Tysabri.

I never went back to work after my second bad attack and have limited mobility.

I do go to parents evening though even though it is a struggle and can get around on the buses. I have to force myself to go out but I have been lucky as it is some time since I have fallen over (I hope I haven’t cursed myself!). One thing’s for sure I couldn’t read legal documents!.

Peter

I’ve had ms for 25 years, diagnosed in 1988 at 21. I had several relapses in the first 3 or 4 years and then virtually nothing until 3 years ago. its like being diagnosed all over again and have my first Rebif injection tomorrow!

Diagnosed 1973; just celebrated 40 years and I do mean celebrated.

I always wanted a different life; didn’t want to be a semi detached suburban man. Yes I was certainly given my wish; I would sooner have been a Richard Branson; or would I?

I’m so lucky; marvellous parents; great jobs; living in the greatest Country in the world; met some of the nicest people (that’s you lot included). I’ve got nothing to moan about; sure I’ve had my hiccups but I have another 40 years before my quality of life deteriorates so I’m gonna enjoy them.

Remember; MS is not a stop sign; its traffic humps.

George

How long I’ve had it, or how long I’ve been diagnosed? These could be two very different things. Diagnosed over 2.5 years, but think I might have it years earlier. I’ve worked it out to a minimum of six before Dx. I’ve got correspondence stretching back that far, complaining of a “mystery illness”, and a friend saying: “Are you sure you’re not short of Vitamin D?” - Ha! Closer than she knew!

But I think there were odd incidents years before that. Coming back from somewhere on the bus, and suddenly not being able to hold my head up. It literally got too heavy for my neck - I was having to prop it up with my hands. It didn’t hurt, but no idea what that was all about! Perhaps an early relapse? And for a non-sporty person, and quite young, I was very prone to injury. And to cramp!

I remember being collapsed on the living room floor one night, years before diagnosis, unable to get up, because I had such severe cramp. I didn’t know what to do, because I’d never heard of anyone calling an ambulance about cramp, but was worried about having to lie on the floor all night. Anyway it went off without my having to dial 999, and became just a funny story, about something weird that happened to me.

But nowadays, such episodes are not uncommon, and I know damn well what the cause is.

A stranger still wouldn’t guess, to look at me, but quality of life has definitely deteriorated. Pain and fatigue are ever-present, but invisible.

Tina

x

I was diagnosed 12 years ago in september after six months on the Pat+Mick .With ‘Handy hindsight’ there had been things going on for a couple of years.Now I can’t walk and can bear to weight bear for about a minute whilst clinging onto the immovable object.

That’s the way the mop flops, “But I’m still drawing breath and benefits”

Woblyboy <(L)>

I was diagnosed last year, looking back their is signs of ms in my life. When i was 8 my eye sight went south for a few months then healed “all by its self”. Many little things like this and a few numb patches etc.

I would say atleast 20 years of ms type symptoms, i could be wrong but we will never know.

Darren

Hi, I had l’hermittes in 1990 following mantle radiation for hodgkins lymphoma. I had MRI, VEPs and lumbar puncture all in the one day and all came back normal. Anyway found out that 25-40% of people who have radiation therapy for hodgkins get l’hermittes so that was deemed to be the cause. It lasted a couple of months then vanished until 2008! Saw first neuro who said I now have delayed radiation myelopathy. A second neuro reckons that I have had MS since that first attack of l’hermittes in 1990 and have followed a benign course. In the last year I have had further MRIs and lumbar puncture done. LP came back negative and MRI seems to just show one cervical lesion. So no confirmed dx given. It is funny though that the l’hermittes I had in 2008 just lasted a few weeks, but the attack seemed to trigger spasticity in right leg only which is refusing to disappear. Essentiall if it is MS then I have only had 2 relapses in 23 years!

Anyway I contacted the lymphoma society and they have never heard of anyone in the UK having delayed radiation myelopathy after treatment for hodgkins lymphoma. It is generally only apparently a slight risk for people who have had radiation directly to a tumour on their spine.

Essentially I am very confused. I am having yet another MRI in June!

Moyna x

I was DX last July, but my problems started 2007 with a limp, that’s what started the ball rolling.

My life has changed so much now feel my life has stopped in some ways, things I don’t do at all now and many I avoid because they are so much hard work. I tend to plan and think things out in my head now work out the pros and cons.

If I go where are the toilets? Will I get parked? Will I get in with my wheelchair or my scooter? Even things like going away is the shower over the bath? How many steps? Hilly? Lifts? This is my head workout now just cannot help it. Not very spontaneous anymore.

But not as stressed anymore more chilled calmer. Appreciate my family and friends. Don’t take things for granted. My wheelchair and scooter are my new legs have an adapted car and stair lift, and lots of other goodies around my home.

My life has changed yes but I still enjoy my life :slight_smile:

i hvent been dx yet but myself symptoms been there for about 5 yrs

1 year dx’d for me, but in hindsight I can say symptoms probably started about five years previously. I only started taking notice about six months before dx as there was always a good excuse for the weirdness!! X

Originally diagnosed with RRMS in March 1999 and now considered to have SPMS.

There were only small problems initially but over the last 5 years progression has accelerated and the effects on day-to-day activities have been greater and cause a good deal more ‘inconvenience’.

I still hope to wake up one morning to find it’s all been fixed!!

Dom

Diagnosed March 1999.

Bored with it now, so ready to give it up !!

Dom

Diagnosed March 1999.

It’s been long enough for me to be fed-up with MS now …would like to give it up right away, please?!

Dom

I was dx in April 2008 with PPMS. In 2006 I had been mis-dx with ME.

Looking back I can remember symptoms as far back as the early 90s. I would get pins and needles a lot. If I was working too hard (which I frequently was) I would get vertigo. I sometimes got very painful wrists… but most of all I would get periods of bad fatigue. At the same time I was going through menopause so blamed it all onto that.

In the end, on New Year’s Day 2006, I got shingles on my face and head. I realise now that I had been pushing myself through fatigue for so long that my body said “Ok… now for something that will really stop you in your tracks!”

I also remember getting bad periods of vertigo in my 20’s (1970’s)… so who knows if it was the beginning of MS.

Pat x

First recognisable symptom was optic neuritis in May/June 1988 so 25 years ago but nothing much happened till 1999 when I was diagnosed. Have had numerous relapses but things seem to have settled down now with the help of Betaferon. I’m stll working part time.

Diagnosed in March 1999 with RRMS. Luckily, not many relapses.

Have now been assessed as SPMS and slowly but steadily having things go downhill.

Trouble speaking, unable to hold a pen - so typing (badly) is currently the only way I can communicate.

MS sucks!!!