Hi all
How long did it take from being referred to a neurologist to you receiving your diagnosis?
Hi there…i was diagnosed within a few weeks of my mri/neuro appointment but i think this was very quick…from reading other posts i now know that others have been months to years for a formal diagnosis. It all seems to be dependant on fitting into the criteria they have for diagnosis and the results of any tests or scans they carry out. I had a few gp appointments, neuro appointment,sent for an mri and then a neuro appointment where i was given the diagnosis. My advice would be to take someone with you to all neuro appointments…i didnt expect ms at all and had gone alone, better to have support there. It is difficult but the best you can do is try to stay positive, carry on with your life and be open with your friends or family about how you feel…
Good luck x
Hello Anon, Mine took 5 months, initially diagnosed with a clinically isolated syndrome following MRI brain scan and 4 months of symptoms prior to my referral, then had a major attack had another MRI brain & spinal scan and LP and then given a definite diagnosis. Taz.
Hello,
Quite quickly after referral to a neurologist - I think it was about eight months after first seeing him. There’s a possibility I might have got diagnosed sooner if I’d agreed to a lumbar puncture, but there’s also a possibility it would’ve been normal/inconclusive, and then I’d have had it for nothing, so I decided to wait to amass enough other evidence (MRI, in my case).
Other people’s accounts of how long it took really may have no bearing on how long for you personally, because it’s all a matter of evidence. Some people have clear evidence almost straight away, but others don’t have enough, and have to wait to see if anything else happens. MS is one of the hardest clinical diagnoses to make, because there’s no definite test. Also, it’s a diagnosis of exclusion, which means you have to be sure there’s nothing else it could be. Sometimes, all the “something elses” can take quite a long time to rule out.
I read quite a concise way of putting it on another MS website the other day, which said that ONE attack is “sclerosis”, but there has to be another attack for MULTIPLE sclerosis. As it’s possible for some people to go years between attacks, or even never to have another one, people can wait a very long time for diagnosis, and a few won’t be diagnosed at all. It’s not known why some people have a single attack - called Clinically Isolated Syndrome - but never go on to have any more. Such people won’t ever be diagnosed with MS, because a single attack never fulfils the multiple bit.
As an aside, despite being diagnosed within months after referral to Neurology, I actually think that was the home straight, rather than the start, and my problems really began a lot earlier. I hadn’t been feeling well for some years, and had been to the doc about a handful of minor, seemingly unrelated things. I now think these were all part of it. So you could say, in a way, that I waited years for diagnosis, because it took a fairly major incident (completely numb, both feet), before I made it to the right department. After that, things moved much faster.
Tina
4 hours!
It was a bit of a shock. My husband cracked, expecting the worst, but the ‘worst’ hasn’t happened yet. I have been at times, very ill, but have always been lucky enough to recover.
I started beta-interferon (Rebif) quite soon after the diagnosis, as I had so many relapses, but it did stop them - not completely but on average down to one every 3 years.
After 12 years, I think I’ve been lucky. Touch wood…
K
3 days. And only then because i was admitted to hospital on a friday night and the MRI wasnt open until Monday am! But within 3 hours of the MRI I was being treated with steroids.
Hx
Hi Anon, My gp told me a week after he ordered an MRI but it took 2 neuros 18 months to confirm it. The first neuro was annoyed with my gp but referred me to an ms specialist. Everyone is different and because so much else has to be ruled out it can take a long time. At the end of the day, it’s a label and not much changes after you get it. I’m assuming your going through the process now, and it does take away that anxiety of the unknown. Chis
mine was 6 mths, mri, lp, visual evoke, bang, MS, it felt like a life time to get the DX, if you’re going through all this, good luck, and take care, Jean x
Following a brain MRI arranged by the consultant opthalmologist I got a phone call from the neuros med sec week before Christmas to say neuro needed to see me urgently but she was on annual leave until 6th January and that she (med sec) wasn’t qualified to discuss my results with me. I spent the whole christmas holiday not knowing whether I had a brain tumour or ms. When I went to see neuro on 6th Jan I was told there and then… Longest bl***y christmas holiday I’ve ever had! Note to self - be careful what you wish for!
Take care
Suex
From having mri, lp and ver - 8 months. Suffered ON, and wakness on right side.
bren
x
From seeing gp in the September, was then taken in for LP and MRI, was told approximately 8weeks later, however, they didn’t know if it would be one episode or last for longer, longer won and the initial symptoms have been with me for 15nyears
8 weeks from seeing neuro. Had VEP, spine and brain MRI which confirmed MS. Brain MRI clear but numerous lesions in spine and optic nerve consistent with my description of symptoms and ON the year before. Diagnosed June and should be starting Rebif in few weeks. Carolyne.
From 1st neuro appointment to diagnosis = 7 months. Teresa xx
I had eye trouble and my optition sent me to eye hosp where they told me it was MS. then things moved quite quickly to seeing a neuro then scans ect.
Sue
From gp referral in march, I was sent for two mri’s (based initially i guess on gp referral letter) before neuro appointment in June when I was diagnosed. About three months.
2 years and 4 months… from first seeing GP to be told I had ‘mild progressive MS’ and about another year to being told I had PPMS. Oh and a mis-dx of ME about 9 months in.
Pat x
hello
mine took at least 10-13 years. after telling the doctors things were not right, being told eventually i had m.e. just to shut me up i think, and 3 mri scans in between before the 4th mri scan actually told me it was M.S.
14 years and still waiting!
luv Pollx
Chuffin ell! Some of you guys got yr dx sooo quickly!
luv Pollx
hi
after a relapse 16 months after first symptoms i was given another MRI which i recieved the results 2 months later which confirmed MS
So wasn’t to long from start to dx