Hi Im just wondering how long it has taken people to get a diagnosis one way or the other. I first started getting symptoms about 2 years ago, (or if you include the fact I was off work for 6 weeks with fatigue 5 years ago then 5 years) after 3 episodes a year later my GP sent me to the nerologist and have since been for 2 scans (just had 2nd one this week) but just wondering how long it may take till I get some answers.
It took me about 15 months to get a diagnosis from first seeing my GP with something weird that couldn’t be ignored for once. However, I know people who have been diagnosed pretty much on the spot in A&E and a few people who are still not diagnosed after more than 10 years.
So the basic answer to your question is that it varies massively - pretty much like everything about MS!
Karen x
ok thanks karen, guess i just have to keep waiting and hope its not 10 years!
Ive still haven’t, still prob for over 3 years
good luck
Tracy x
Hi Sheena,
You’d think how long it took would be a straightforward question with a straightforward answer, but oddly, I can’t really tell you how long, because it depends when you start measuring from. There is also a bit of a grey area around exactly when I was diagnosed, because I had been “told” long before it was confirmed officially.
From when I was first visited a neuro, I think I was “told” of his belief it was MS within the month. However, I wasn’t aware of the technicalities of diagnosis, back then. It would take another six months and further scans before he would commit to it in writing.
But looking back to when I was referred to anyone about anything, that dates back at least another four or five years. I’d been referred to Rheumatology, about symptoms I’m now positive were MS-related. But although it was a reasonable guess, on my doctor’s part, Rheumatology wasn’t the right field, and so they didn’t find anything. I spent at least another four years thinking my problems were ordinary ageing, coupled with a touch of hypochondria. That was until I had a more classic MS relapse, and ended up at the right department, this time.
But I could look back further still, and ask myself when I first went to the doctor with unexplained symptoms. As a young woman, in my 20s, I had what seemed a lot of unexplained “injuries” - muscle strains, tendonitis and the like - especially for someone who wasn’t very sporty.
I now think all these unexplained “injuries” were MS spasticity, or MS relapses. I do remember saying to the doctor, after yet another “pulled tendon” injury: “I don’t understand how I could have done this!”. But he shrugged, and said: “You might have done it stepping off a kerb”.
Which is true, I s’pose. But I remember thinking it was a bit odd, and even stranger that I hadn’t noticed the moment of injury.
I’ll never know for sure, but I think there’s a possibility I had it 20 years without being diagnosed. Not meaning to depress you, because once it was suspected, it was diagnosed pretty quickly. But for years, nobody suspected. All my symptoms were treated as separate, unrelated incidents - by me too!
Tina
Hi, that is a particularly difficult question to answer, it all depends on so many things, like how good your doctor is, how seriously they take your symptoms, how quickly you get refered and so on.
In my case, the time it took from when i first went to the doctor with my symptoms, to when i got diagnosed was 12 long years! the main reason for this was that my symptoms were not taken seriously, it got to the stage where they had almost made me believe that my symptoms were alll in my head. when i finally got a diagnosis, it was such a relief to know that there was actually something wrong with me.
i really hope that you get diagnosed a lot quicker than i did. feel free to pm me if you want to talk, love Bex xx
Hi ya
For me it was six months - from my very 1st appt with my neuro up until the day that he confirmed I had ms - that was almost 2 years ago.
But looking back now, I reckon I unknowingly had ms for 6 or 7 years prior to that. Maybe longer.
Receiving confirmation that it is ms really does vary a lot from person to person though because there are so many other possibilities. Fingers crossed that you get some answers soon.
Good luck
Debbie xx
Hi Sheena,
It took 2 years and 3 MRI’s to diagnose me. I had actually put it out of my mind when I got “the call”.
Rach
Hiya. I was diagnosed within 6 months of first seeing neuro. I originally got a bad episode of vertigo followed be some weird neurological symptoms in Jan 2010 but I was referred to ENT. I was sent for an MRI as all my ENT tests came back normal. The MRI wasn’t so I was sent to neurology towards Xmas 2010 and I was diagnosed in may 2011. I think it varies alot. I wouldn’t of been diagnosed without the LP. The neuro said he wasn’t entirely convinced on MRI evidence alone. I can guarantee that although a ‘diagnosis’ feels like the be all and end all, you won’t want it if it ever comes. Take care, Suz xx
thank you everyone, it helps to hear that everyone else has gone through this same waiting game. I was beginning to feel a bit down about it all but am now feeling more positive.
I was taken in to hospital one day and diagnosed the same day. I’d had a relapse the previous year but not needed any medical attention but quite thankful that I was oblivious and not “waiting” that whole time.
I went straight in at the sensory deep end. First 8 week episode, then one 12 week relapse with knobs on, and that’s now just over 2 yrs from the beginning with symptoms every day pretty much since the relapse, and as yet nowhere near Dx. Still having pointless tests.
I think it depends how quickly your symptoms first sent you to the arms of the Dr, and what they are. Mine was when I found I could not kill the pain I was in with fairly strong prescription NSAIDS. And had beetles running round on my skin. Especially the beetles. Explain beetles, eh? That was quite quickly in with a whole bunch of serious (well, I thought so) symptoms.
Possibly my neuro history made me sensistive to being numb to the knees, and my gums going completely numb etc. I’ve had neuropathic pain and parasthesia before. If I hadn’t had neck surgery and lower back disc trouble, I might not have been so alert to odd things. But I failed to rationalise beetles running round on my skin. Still can’t unless I have MS.
If you have falling over bumping into things history rather than outright weird sensory stuff and pain, then it’s not perhaps so noticeable and you put up with it for longer.
Hi, time to get a dx varies enormously from person to person.
I am still waiting for a definite one, after 14 yrs!
In 2003 I nagged a 95% dx of PPMS out of a neuro.
If I hadn`t wittered at him, i doubt I would have got anythibng yet!
Ive had typical PPMS symptoms all along, so what they are waiting for, I dont know!
Hope you don`t have to wait too much longer.
luv Pollx
As others have said it can be so different depending on the person, and dare I say it, the doctors.
My dx was pretty quick in truth, I had some major symptoms last september that the dr could not dx so sent me to neuro. At first it looked like a different condition but sent for mri to check for any other causes and that’s when the MS was first mentioned as possible reason. Had an lp done and confirmed dx in March. I did have bladder issues a few years ago but waived away by urology. I feel quite lucky that it was quick and neuro decided to do the mri as well.
Hope that they get all your tests done that you need to find out one way or another.
Ashley
As others have said it can be so different depending on the person, and dare I say it, the doctors.
My dx was pretty quick in truth, I had some major symptoms last september that the dr could not dx so sent me to neuro. At first it looked like a different condition but sent for mri to check for any other causes and that’s when the MS was first mentioned as possible reason. Had an lp done and confirmed dx in March. I did have bladder issues a few years ago but waived away by urology. I feel quite lucky that it was quick and neuro decided to do the mri as well.
Hope that they get all your tests done that you need to find out one way or another.
Ashley
Well still waiting on results from mri but now off work with exhaustion, had to fnally give in to it, took annual leave for a few days but it didnt clear up. about 4 years ago i ended up being off for 6/7 weeks so really hoping i am not about to go through that again. Also now wondering if it is linked to poss ms as then it was put down to post viral syndrome but with my new symptoms I guess they may be linked. really hope not as i really dont want ms (sorry to those who have been diagnosed already) been for more blood tests to rule out the basics. Anyhow I will rest and hope for the best. on the plus side everyone is being so lovely about it, including my manager at work so I am really lucky.