I had a very aggressive start to my MS a couple of years ago. The massive relapses have since been under control with tysabri but I think it was affecting me before I had such obvious relapses, mainly in the form of fatigue.
I know everyones disease course and experience of MS is different but wondering what others have experienced…
Hi Eski,
Yeah, definitely. I hadn’t been feeling well for years. Only minor, piddly, little things, mostly. And non-specific stuff like tiredness, and seeming to get an uncommon number of muscular injuries - a bit weird for a couch potato like me!
If I was out playing aggressive sport all the time, I could have understood it.
Tina
In my case yes, i was diagnosed after a bad relapse when i was 32, but from the age of 17 i kept having epsisodes of illness that quickly came on and went just as quick,
when i had my son when i was 20, 6 weeks after i had him, i went numb from the waist down,that was put down to a lack of b vitamins,i sufferd major panic attacks as well, and always felt unwell and was always having tests for all sort of symptoms,it wasnt until i was diagnosed that i thought ‘Thats what the probelms been all these years’ it was like the last piece of the jigsaw,and i think a lot on this site would say the same.
and i always felt different to other people too,if i tried to push myself too much, boy did i know about it.
Hi
A few things never added up with me before this illness became clear, they kinda a make sense now looking back and could well of been early signs of MS, but with what I was getting there is no way my GP could of made the MS conection.
Before my first major relapse I had been suffering from bouts of ill health that I kept thinking were a weird virus. I eventually saw my GP who referred me to a neuro for ? demyleinating disease. I didn’t even know what it meant and never thought it was MS. The neuro couldn’t find anything wrong and sent me away.
A couple of years later I had my first major relpase that landed me in hospital and I went through the first batch of MS tests. The neuro there said he thought I might have MS but it was another 8 years before it was confirmed.
In hindsight I probably had MS burbling along for 4-6 years before my initial neuro appointment.
Cheers,
Belinda
I was diagnosed after a relapse at 32, but had things going on since 19 (possibly earlier). The first definite thing was pretty bad oscillopsia (when both eyes randomly jump all over the place in different directions and you get really horrible vertigo), but it didn’t last long and I just assumed it was a weird hangover or something. Some other things were sudden inexplicable fatigue lasting a few days (e.g. one Saturday I got into the car feeling fine; got out at the supermarket and could hardly walk - had to use the trolley to hold me up), tingling in my lips and finger tips and a couple of periods when my left ankle kept giving way on me. I always wrote them off as unimportant (“one of those weird things that happens to us sometimes”) or a virus or something related to my back problems.
I finally decided that maybe I should see a GP when the sensation in my legs went haywire and then got worse instead of better.
Interesting question btw. I’m looking forward to seeing what others say.
Karen x
Mine started with bladder problems 5 years ago and when I googles it, it said it could be a sign of MS. So it has been in the back of my mind for years! Then, I started to get leg weakness and I joined the dots again. Saw one of the GP’s in our practise who replied that if it is MS you don’t want to know as they can’t do anything for you! What a bitch! Another GP told me it was stress, which I believed until the beginning of last year when my legs got really bad. Finally saw the Neuro in May and was dx in December. So, I suspected long ago but the medical profession tried to put me off. My GP couldn’t pooh pooh it when I saw him last March as I could hardly walk! Anyway, I have digressed slightly, but yes I had symptoms for a while before I hit the MS treadmill. Teresa xx
Sorry, I am not RRMS but PPMS so my answer probably doesn’t really apply to your question. Teresa xx
Yes definitely; I was having minor relapses when I was in my early 30s and didn’t bother to go to the doctor. I thought it was arthritis and thought I’d cured it when I gave up eating meat. It caught up with me again in 2000 and has steadily got worse until 2007 when I had a bad relapse and 2008 was finally dx at the age of 52. I’m glad I didn’t know I had it as I’ve lived a reasonably normal life until dx.
Wendy
x
Oh yes - I’ve had what I now realise were symptoms since I was 12. Mostly a tingling/burning sensation in various parts of my skin - the GP didn’t really investigate it or explain it at the time. Then when I was 28 (after a few other symptoms, and continual asking my GP if it was MS), I went blind in one eye with optic neuritis. That made them take my concerns seriously, and my GP actually apologised to me when I saw him next and said “I was right, wasn’t I?”. I think that most of us will have had at least one niggling, unexplained symptom which didn’t make sense until whatever it was that happened to get the MS diagnosis happened.
Luisa x
I’m not really sure, I had joint pain for years and I was very tired a lot of the time, but I’ve not slept well since I was pregnant with my first son 6 years ago so always attributed it to this, there is nothing I’d particularly pin on MS.
Not a sausage until the start of the string of relapses that got me diagnosed in my late 30s. Except for one episode of unbelievable crashing tiredness for a few days when I was about 20, accompanied by dificulty speaking. The neuro said that was all a side effect of a drug I was on at the time (Maxolon), but I do wonder sometimes.
Alison
x
I find it quite reassuring that I do not seem to be the only one who cannot exactly say 'I have had MS since 19… ’ and then come up with for example the year that one was diagnosed.
Facts: I am 48 now, was diagnosed at the age of 40, but seem to think that my very first ‘symptom’ (a tremendous headache at the age of 11 that disappeared fairly quickly but which I still remember almost 40 (blimey!) years later because of the ‘suddenness’ (if you know what I mean)… ‘Serious’ problems during my time at Secondary School were to follow soon after (eg uncontrollable eye and shoulder movements). I started off very well but became mentally wrecked in the end, probably caused by, as I see it now, fatigue and the inability to stay focussed.
The years after seemed more under control as I got sort of used to it although the level of frustration has always been the same! (mainly caused by the thought of knowing something is not right). There were however some strange ‘incidents’ throughout these years which could never be properly explained (lack of bladder control, issues with my eyes, lack of concentration, dragging feet, not able to store information, fainting, etc.). And there have been times that confusion could have beaten common sense, poisoned by desparation.
When I was finally diagnosed in 2003 (after my legs gave in on a treadmill) it felt as a relieve in the first instance, as I could finally come up with reasons for certain ‘shortcomings’.
This was short lived however realising the effect this was going to have on my work and family life, especially because of other serious family circumstances which had already added a lot of pressure on our family. I have been lucky however that I am blessed with a loving and non demanding partner; at least we can take care of our daughter, who has severe learning difficulties (but is quicker than I am…) while in partnership.
I have been without work for half a year now. I am still sort of mobile but because of the problems with my daughter (needs 24 hour assistance as she is not aware of danger the way we are) I am considering ‘calling it the day’ and to use my limited energy for the care of my daughter (as my wife works). To be continued… (and apologies for ‘leaving’ the original subject…).
Jos
I had an operation in 1992 and a few months later, I went numb down one side and felt sick and dizzy. I went to the GP and my blood pressure was sky high (200+/120) so they sent me to the observation ward at Southmead hospital.
Later that day, I had a funny turn and the BP soared even higher and I came pretty close to dying. It took several weeks to recover and yet, despite obvious neurological symptoms - spasms, numbness, dizziness, no one mentioned MS.
I had to take a beta-blocker and later on two more drugs to control the hypertension, but once I got better, just got on with life.
I had odd episodes - injuries, strange pain that went away after 6 weeks or so, more injuries, severe dehydration for no apparent reason - and it hurts, a lot, muscle spasms that lasted weeks - but it didn’t stop ordinary life. We went to live in Asia, I worked as a classical/operatic soloist and taught singing and conducted choirs.
The funny thing was that I’d always get some odd illness after concerts, but we began to expect them after a while and then one day, in 2000, I got double vision. I was diagnosed with MS very quickly - 6 hours after the MRI and then went downhill fast and started the only drug available where I was living at that time - Rebif. To my relief it worked, but then we had to pay for it - and it wasn’t cheap - and smuggle it into the country that we were living.
I’m still on Rebif (not having to pay for it since 02) now and despite a lot of ups and downs, I’m pretty much the same as when I started it. There’s been a lot of physical downs though, but once I changed my diet and started LDN, things have been pretty good.
I did find living in the UK too difficult. There were too many people and cars for my eyes to cope with and I’d feel desperately drunk after 5 minutes of walking, so we moved to the very quiet, remote part of Spain where we now live, well where we could afford to buy a house and to live.
I have no more vision problems, just osteo-arthritis and constant challenges, but I think having to become fluent in two languages has been very good for my brain. I was terrible at languages at school and never dreamed that I’d find Spanish so easy to learn.
You can never know what’s around the corner. I’ve even gone back to singing again and that’s really hard work. The difficulty is trying to do things that don’t make the MS worse and not to work too hard. I’m suffering after stacking large logs for 3 hours on Saturday and it had to be done. My knees are not happy with me.