missfi 02/11/11
Last reply 6 years ago
Bit of research or just being nosey

Hiya..I am interested to know how long it took for you guys to be diagnosed from when you had your first symptom and also can anyone remember their first symptom starting following a stressful type situation.
It took 2 years for me to be diagnosed following the sudden death of my boyfriend

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GMG
6 years ago

Sorry to hear about your boyfriend – that must’ve been really hard. There is evidence that major life events which cause stress can bring on relapses (according to information my MS Nurse gave me). However, there are lots of other things which can bring on relapses as well, and they can also occur somewhat randomly too! I was diagnosed within a year of me seeing the consultant for the first time but I know that is relatively quick. I know someone else with MS so was already clued up about what questions to ask and tests to be following up in case it was MS, which it turns out it is. However, I know some people can take up to 10 years to be diagnosed, especially older people who get symptoms on and off for years but no one puts the jigsaw pieces together to see the bigger picture.


Lillylilly
6 years ago

I had my first symptom on a Wednesday, and on the following Wednesday I was told that it was likely I had MS after an MRI and Lumbar Puncture. I was on medication within weeks due to the progress of symptoms. Two months before that, I had been promoted in my job and had a was involved with a highly stressful new work project project. I reckon this probably triggered it.


tararo
6 years ago

My first symptom was in Jan 2009 (muscle weakness in my leg) but the GPs didn’t think anything of it. My second symptom was crazy dizziness which the GP dealt with straight away; got an MRI and hospital appt. Results from the scan showed MS and I got that in dec ’09. Got sent to another dept (neurology) and got a confirmed diagnosis of MS in Aug 2010. So that’s 18months 🙂


mattymohawk
6 years ago

thats horrible fi,sorry to hear that.had my first turn in march this year.my dog (best friend & partner in crime) got attacked & was lucky to live & 1 week after my right leg went very weak,put it down to doing to much in gym & shook it off over a month & returned to gym.then had severe dizzyness which gp thought was anxiety.then i had to split my dog & a pitbull up,very bad situation & again 1 week later on 25th august this year symptoms appeared but more severe.lost all strength on left side.diagnosed on 1st september & now on copaxone everyday.in my case i’m 100% that stress or trauma is the trigger.my specialist says there are a lot of people who develope ms after a car crash because of the sudden shock to the system.i heard that a lot of women find out after they have gave birth,again a massive stress n strain on the body.i am pretty sure that when i see the guy who owns the dog that nearly killed mine i will show him what its like to be laid up in hospital for a while 🙂


missfi
6 years ago

that’s awful Matty, hope your dog is ok now. I defnitely do think it is brought on by stress now but it’s about time they find how to prevent and cure it


mattymohawk
6 years ago

he’s back to his naughty self now 🙂 my mom got me a beginer dvd for tai chi.at first i just felt awkward tryin the moves but when i chilled & focused on relaxin & not gettin the moves exactly right it did make me feel quite calm.apparently you can even get results if its done while sitting.going for a hot stone massage nxt week.even if it don’t help much it sounds nice.take some time out for yourself fi,feels good when you find a way of relaxin your body


Lus
6 years ago

I had my first symptom nearly 2 years before being diagnosed. I had blurred vision and was told i probably had a brain tumor and had to wait 2 weeks for an MRI!! From there they told me it was nothing and sent me home. I had a second attack over a year later and was told that it was MS. Cant remember being stressed or upset at either times though


janep
6 years ago

My early symptoms were all paired with stress, which made it so much easier for me to ignore the possibility of any other cause for them! Particularly as they went away again of their own accord. It wasn’t until my legs went completely numb and I nearly fell down the stairs that the GP started to wonder… so for me, dx was about 12 months after my first symptoms via a rather circuitous route.


IANG
6 years ago

HI FI MY FIRST SYMPTOMS STARTED ABOUT 9 YEARS AGO . I STARTED OF WITH MY EYESIGHT GOING . THIS WENT ON FOR ABOUT 6 YEARS JUST LOSING MY EYESIGHT AND THE DOCTOR AT THE HOSPITAL SAID IT WAS DEVICS DISEASE .THEN THREE YEARS AGO HAD MY WORST RELAPSE WHEN EVERYTHING WENT MY LEGS MY SPEECH MY EYESIGHT .I THEN GOT TOLD IT WAS MS . IN ALL IT WAS ABOU 9 YEARS. TAKE CARE …..IAN G X.


Mawson
6 years ago

I found out fairly quickly. I was on holiday with friends and hit my head incredibly hard, a couple of days later I was in Madrid train station and remember saying “think I need new glasses.” That was in the August and after loads of tests told had optic neurtis, which the doctor thought was brought on by a virus. The following April I had pins and needles down both arms and legs and kept being sick, that was when the doctors twigged. It was also at the same time my fantastic partner was in the process odf joining the army. So was fairly quick. Do agree with the stress bit mind as feel my worst relapse was when I was doing stressful exams and Neil was in Iraq.


GMG
6 years ago

Ian G – did they not do a blood test for aquaporin-4 when they said it was Devic’s?

In general, it does seem most people are getting diagnosed quicker these days. I know people in their 50s and 60s who have been getting symptoms for years but have only just been diagnosed, while younger people seem to get diagnosed within a few years (remember, it does usually need 2 separate relapses to be able to give a definite diagnosis).


IANG
6 years ago

HI GMG I AM SORRY I DONT KNOW WHAT TO CALL YOU . THEY DID NOT TEST FOR ANYTHING . I WAS GIVEN A LUMBER PUNCTURE THE FIRST TIME IT KICKED OFF . APART FROM ANOTHER TWO LUMBER PUNCTURES NOTHING ELSE . I HAVE HAD EIGHT RELAPSES SINCE I THINK . BUT NOW IM ON TYSABRI NOTHING FOR THREE YEARS . FINGERS CROSSED . TAKE CARE AND I WISH YOU WELL……IAN G X.


GMG
6 years ago

@ian G – call me GMG :o) I’m surprised they said it was Devic’s without doing a blood test. Just as with an LP oligloconal banding can point to an MS diagnosis, a positive aquaporin-4 blood test points to Devic’s. I had both and came back negative for aquaporin-4 but positive for oligloconal banding hence my MS diagnosis.

Hope the Tysabri works for you – eight relapses sounds tough!!


missfi
6 years ago

Thanks for all your replies Guys…very interesting. Can I ask GMG are you a Dr in MS


T
6 years ago

My diagnosis took 9 months. I had two MRIs in that time, an LP and a blood test to rule out Devic’s too. All my diagnostic tests were done privately though, which seems to be MUCH faster than on the NHS. All my MRIs and my LP were booked within two weeks of them being requested!


Gem
6 years ago

I had l’hermittes which led to an MRI (I thought I just had a bad shoulder!) then 6 months later optic neuritis and a diagnosis of MS so mine was very quick! Quite a shock to the system when I thought I was perfectly well!! I wasn’t stressed until the diagnosis & have been massively stressed at times since with no MS symptoms at all at those times, so doesn’t seem to make much difference to me!


GMG
6 years ago

miss fi – no I’m not a doctor at all! :o) Just a very interested individual who does a lot of her own research and never takes what the doctor tells her at face value without asking tonnes of questions! I always want to know in minute detail about any tests or procedures which will be carried out and I want to thoroughly understand things before making decision regarding my health. I talk a lot to people which I’ve found is actually the best way of finding out about things. That’s one of the reasons I think this website is invaluable – people’s own experiences can be very different to what a doctor may learn in a textbook case study!


Si
6 years ago

(Dr) GMG – I totally agree with your assessment that this site is ‘invaluable’. It’s priceless to hear news from similar like minyded people.
TO ALL: Get your hotel booked for the conference in Manchester next year. We can all have a ‘shiftms’ night out. Beki can get the first round in 🙂


IANG
6 years ago

YEAH I LOOK FORWARD TO IT


Gav
6 years ago

here here 😉


Gem
6 years ago

What conference?!


Si
6 years ago

It’s actually called ‘MSLife 2012’. And takes place on the 14th & 15th April 2012. More details can be found via the link below:

http://www.mssociety.org.uk/ms-events/2011/05/ms-life-2012

When I last attended I found some of the lectures/presentations very informative.


Alison
6 years ago

I had my first symptoms in 1986 when I temporarily lost the sight in one eye, and was finally diagnosed in 2006 – is this a record!? I had a major relapse Christmas 2009 after being made redundant the previous August, which was extremely stressful.

well my first relapse was in 2002 (following a stressful event) and that was put down to a trapped nerve!! Then another in about 2004…dizzyness….put down to ear infection. Optic neuritus….eye infection! the end 2008 physio noticed i had trouble with balance. she refered me to neuro at beginning 2009, and he said probable MS. After blood tests, brain MRI and LP i was finally diagnosed in June 2009.
To be honest suspected something like that myself after self diagnosing via the internet. It’s funny how nobody believes you over the years cos you sound like a hyperchondriac!!

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