HOW LONG HAS EVERYONE HAD MS

Everyday living
1

hi everyone,

I was diagnosed with ms in 2010,i think i have had it for 5 years or more.It is quite frightening not knowing what is going to happen next or how long it is going to be before it gets any worse.I don’t think i have had a relapse so i have been very lucky.I have rrms,it is just you read some post on here and within 2 years someone is in a wheelchair which is very sad.If possible i would like to here from some people on how long they have had ms and how they are now.

Thanks for any help

Nina x

2

Nina,

We are all so different - so complex. No two people have the same outcome - so stay positive and live for the day.

l have had SPMS for 30yrs. l still manage in a fashion to get about - have to hold onto furniture indoors - and use a stick for outside - plus a scooter to get out and about with my dogs. l do still manage to ride my horse - occasionally - with help of friends. Went down to our village pub last night - had the local rock band playing - and l stood up all evening - well leaned on the bar and held my stick - and did dance about - did a bit of head banging!!!

So lifes not all doom and gloom

Frances.

3

Hi Nina I’ve been diagnosed for eight years but I think I’ve had it for at least thirteen, I have rrms but I’m still quite fit, I try to keep a grip on things and be positive, I don’t use my wheelchair unless I’m on a really bad day, everyone is different and we can’t read the future just try and stay as fit and active as you can both mentally and physically, I got myself two donkeys and I love them to bits they help me to get out of bed in the mornings, without me who would feed them (my husband or kids on bad days) they help me stay positive. I hope this helps Jane

4

Yes Frances is right, MS is a weird thing as no one has the same outcome. I have had MS since 2003 and my MS has just moved onto SPMS this year. I use a walking stick and try and keep myself busy. That helps me to overcome the depressing times.

Just try and keep your chin up and remember that everyone with MS has different symptoms.

Nina :wink:

5

Hi Nina,

Similar story to you. Diagnosed 2010, but suspect I’ve had it years longer.

Thanks to the wonders of technology, I found e-mail correspondence going back years, in which I’d said to friends things like: “I don’t feel very well”, and: “I think there might be something wrong with me.”

And I’d had inconclusive hospital investigations at least four years before diagnosis, too. I first saw a consultant rheumatologist, who was convinced something was wrong. I was optimistic he’d get to the bottom of it, but when I went back for my follow-up, I discovered he’d left. His successor diagnosed “wear and tear” (“Unfortunate, at your age, but it does happen”) and discharged me, with advice to “rest and take ibuprofen”.

Resting and taking ibuprofen didn’t really seem to help much (Strange, that, eh?), but I naively assumed anything serious would have been found.

So I was actually comforted by the fact I’d been discharged, and did my best to ignore symptoms, after that, thinking they were a natural part of getting older.

Then, in Jan 2010, I had stroke-like symptoms, that were much less easy to ignore - completely lost sensation in my feet. This set me on the path to a correct diagnosis.

Oh, and I haven’t even talked about all the incorrect diagnoses, apart from “wear and tear”, such as: “It’s your shoes!” and: “You have one leg longer than the other!” Complete tosh, of course. I’d never worn extreme high heels - nothing to cause me trouble walking - and although none of us is perfectly symmetrical, I’m sure I’m not so lopsided as for that to be the cause of everything.

With hindsight, it’s really quite alarming the hogwash (some) medical professionals tell you, when what they really mean is: “I’ve no idea”. At times, I’ve actually come home thinking it was MY FAULT, from years of wearing unsuitable shoes etc. And of course, such answers put me off searching for the real reason, because if someone in a white coat tells you: “Your problems are due to your footwear”, or: “It’s just your age”, you believe them.

I now think there were even things in my 20s that weren’t quite right. Or even before that, to childhood? Why couldn’t I skip, hop, and balance, like other kids?

To some extent, I feel I’ve always been “athletically challenged”, shall we say. But whether this is coincidence, or means things started very young indeed, I suppose I’ll never know.

Tina

6

Hi Nina I was diagnosed on the 17/5/12 and I am trying to come to terms with dx, implications to family & self as well as neuro option of taking tysabri. This is my 2nd or 3rd relapse in 6 months. Currently I use 2 crutches as I cannot walk far, as I keep falling over. I had a shrink, but booted them in to touch after 3 sessions, we were not getting any where - no connection. I look forward to going back to work as I don’t want this to get better of me. You can find what “type of” ms by clicking on post name, sorry I can’t remember, some other info there. I thinking have had symptoms about 4. That me in a nutshell, take it easy Mike x

7

Diagnosed 20 years can trace it back 39 years. I have had a few spells in a wheelchair after bad relapses but have always done my exercises and got out of them. Currently walking unaided.

Only 15% of people with MS are completely reliant on a wheelchair. Most of them have PPMS which tends to attack the legs early on. I have friends who have been in this situation for over 20 years - it doesn’t stop them getting out and about.

We are all different. Don’t worry about things that may never happen.

Liz

8

i was only DX’d last year but the more i think about it i think i might have bean suffering since i was about 13 so by that prognosis 12 years. So far iv only had 2 relapses but nothing bad enough to put me in a whealchair.

9

Hi Nina

I have had ppms for just over 30 years, and yes, I am a wheelchair user, but honestly it is not the

end of the world. In fact, for me, it was the complete opposite, from not being able to go out, to

finding my independence and freedom again.

Remember, everyones ms follows a different course, but mine affected my legs from the start, but

it hasn’t stopped me. Perhaps being a “rebel” helped me!

Take care

Pam

10

Hello Nina,

I developed MS when I was 17 and I had to leave school as a result. In hindsight, I think that this had been with me for two or so years or more. But despite this early onset (and I have had some real humdingers of relapses!) I am now 43 and I am still mobile. Yes, I might end up in a wheelchair, but then again I may not. I may also get run over by as bus or fall in love with a waiter who looks like Omar Sharrif! Ultimately, everyone is different. I used to fret about “the future”, but as I can do little to alter it I don’t bother anymore.

Take a chill pill.

Best Wishes,

Moira

11

I was diagnosed 14 years ago, but can trace it back 28 years.

I had to stop work fairly early after dx because of fatigue, but up until two years ago I was still doing taekwondo, dancing, studying as well as tutoring and lecturing part-time; a stranger would ever guess I had MS. 2010 was a bad year so I now use a walking stick outdoors and a chair for longer “walks”, but I’m still very active and life is good.

Karen x

12

Going back over my history my doctors and I also recon the first signs were when I was 19.So that make around 26 years for me…

Thank god I changed doctors when I did as at last someone listened and sent me for tests and that someone actualt read my history.

13

Hi, Ive had neuro/mobility problems for 14 years. I have a list of possible diagnoses, one being PPMS, the second is HSP and the 3rd is myleopathy. Knowing what I am like, I feel sure it is PPMS. Doubt Ill ever get to know for sure, with the way the neuros are faffing about!

I am one of the in a wheelchair within 2 years category you mention.

But please may I say, that being a wheelie isn`t the end of the world. Yes, I know it is an absolutely horrendous thought for anyone not with my experiences. Like you and others, I used to think people in wheelchairs must have an impossible life. Using a wheelie gives me safety from falls (most of the time), and more energy to enjoy things I want to do.

I began using a hoist last year and that too is a Godsend, but for years I was horrified at the sight of them.

Life goes on and I still enjoy mine enormously.

Try not to dwell on what might happen, as it may never happen, eh?

luv Pollx

14

Poll

Thank you for your wise reply.

Wheelchair is not the worse thing that can happen. When I have said this previously I have been accused of being insensitive and not knowing what I am talking about…Whilst this may be true to some extent, I have many friends who are wheelchair users and have spoke frankly and honestly with them re their experience. Double leg amputation following an accident must be horrendous yet my friend always has a cheery word for everyone. I sincerely believe that mindset has alot to do with how we cope-and sometimes we are our own worst enemy!

Personally, I am more concerned re my breathing. I can live without my legs-breathing is compulsory!!!

Ellie x

15

Ive had ms for 11 years now. Had ON, TN, gastric issues, bowel/bladder and have numb bits. Fatigue is the worst symptom for me, plus some double vision which has been corrected by prisms in my glasses.

Im still mobile, be it slower than I used to be, and limp slightly. Use stick for stability most of the time.

Not everyone ends up in a wheelchair. I know of two older ladies, one in her 80’s and another in her 90’s both suffering ms and both still mobile. They are an inspiration to me.

bren

x

16

Hi Nina

It is such a different story for all of us. I do think that lifestyle can affect it. I was dx in 2008 after several bad relapses within a few months. I had been having symptoms since 2000 but remember having a numb hand in around 1990. (Thought it was arthritis and gave up eating red meat), later gave up meat altogether and do wonder if the low fat diet helped. Apart from weird balance problems I went on living fairly normally till 2000. Since menopause it has been worse. Think I should have stuck to the HRT.

Wendyx

17

Hi nina, Diagnosed 1997 still active no aids for walking can walk for 1 hr then fatigue sets in . Mum 70 diagnosed when 32 not full time wheelchair user. So as others have said this is different 4 each individual . Yes it does feel it would be better if predictable. I watch many friends deal with things far worse so I try and maintain perspective. Take care Tikka

18

I was only recently diagnosed but myself and my neuro thinks I have had it for at least 12 years.

I am only 30 now and untill January 2011 my only symptoms (that I can think of) were severe fatigue, constipation and urinary frequency.

I have progressed quite quickly since Jan 2011 but if I have had it that long thats not too bad

19

Diagnosed 1973 39 years ago; wheelchair 1980 no difference since 1982. To be honest slight deterioration in 1997 owing to MRSA and my leg amputated.

MS is not a stop sign its traffic humps.

George

20

Hi Nina I was dx in Dec 2011 but can trace it back 5 years or so. I have PPMS. This has mostly affected my legs and I have to walk holding on to the furniture at home and use a stick going out. My legs are getting progressively worse but I have just started on LDN and am hoping this may help. I don’t know what my future will hold but I try not to think too far ahead. Teresa xx