Thursday, 28 May 2015

MS Society Press Release: World MS Day - Diagnosis Story

Survey reveals many people are misdiagnosed and
live in uncertainty for years before MS diagnosis

·        1 in 4 people with MS misdiagnosed with having a trapped nerve
·        1 in 10 people with MS told they'd had a stroke
·        39% of people with MS left waiting a year or more for diagnosis
The survey of over 1,500 people with MS in the UK found that 81% had been misdiagnosed by their GP; more than a quarter were told they had a trapped nerve (28%) and about 1 in 10 people were misdiagnosed with depression or anxiety or stress (14%) or told they'd suffered a stroke (11%).
There are over 100,000 people living with MS in the UK – 5,000 are newly diagnosed every year. It is the most common disabling neurological condition in young adults with symptoms usually starting in the 20s and 30s, yet awareness remains low.
1 in 5 (20%) people had to wait between 1 and 3 years for a diagnosis following their first visit to their GP with early MS symptoms. 1 in 4 people (25%) visited their GP over four times before they were referred to a neurologist for further examination. While MS can be difficult to diagnose, delays such as these can be harmful; they prevent people from taking the necessary steps to manage their condition effectively and there is evidence that early treatment has long-term benefits.  
Michelle Mitchell, Chief Executive at the MS Society said:  "Our findings highlight the struggle people go through for years before they get an MS diagnosis. Being misdiagnosed or experiencing symptoms that can't be explained can put a considerable strain on people's emotions and health. A fast, accurate diagnosis enables people to take steps to begin to manage their condition, access treatment and take greater control of their lives again.
"People often experience symptoms which interfere with daily life whilst in their prime, when families and careers are developing. While we are aware that MS is a complex condition that isn't easy to diagnose, we don't want thousands of people to be left in 'limbo' suffering needlessly.
"It's important for GPs to recognise the warning signs and refer people promptly to a consultant neurologist who can then make an accurate diagnosis. Most people who experience MS-like symptoms won't have the condition but if you're concerned for any reason your GP should still be your first port of call."
Professor Alan Thompson, Consultant Neurologist at the National Hospital for Neurology and Dean of the UCL Faculty of Brain Sciences, said: "I've seen a number of people in my clinic who have never heard of MS so it doesn't surprise me that 1 in 3 people in the survey say they didn't know what it was before diagnosis. Early symptoms of MS can fluctuate and can be attributed to a number of other things, which is why awareness of the condition is so crucial – both for GP's and the general public.
"We've moved on so much in terms of the treatments that are available to slow the long term damage that relapsing forms of MS cause, so a prompt and accurate diagnosis of MS can make an enormous difference. It is only once someone is diagnosed that they can begin to understand and manage their condition."
Out of the 1,515 people surveyed, the most common early symptoms of MS were reported as being:
·        Numbness and altered sensations in different parts of body (tingling/pins and needles) – 53% (800 people)
·        Difficulties with walking – 41% (623 people)
·        Eye and vision problems – 47% (709 people)
·        Fatigue – 38% (570)
·        Problems with balance and coordination – 35% (531)
·        Muscle weakness – 31% (473)
·        Muscle stiffness and spasms – 20% (306)
World MS Day is the only global awareness raising campaign for MS. Every year, it brings the community together to provide the public with information about MS and how it affects the lives of more than two million people around the world. 
The MS Society is the UK's leading MS charity for people living with MS in the UK. It is funding research and fighting to improve treatment and care to help people with the condition take control of their lives.   
  • For more information about MS visit: www.mssociety.org.uk
  • The MS Society has played a pivotal role by investing over £150 million in MS research to date which has led to major advances in treatment development
  • The MS Society launched the Treat Me Right campaign in April 2014 to call for the right treatment at the right time for people with MS. For further information visit www.treatmerightms.org.uk

23 comments:

  1. A quite disturbing statistic, why are doctors so rubbish at diagnosing?

    MS is such a tricky one? ProfG has written that there maybe over 10% misdiagnosis by Neuros....who are trained in neurology but an 80% misidentification rate is a massive fail in any ones marking system. As time is brain this is truly shocking to me.

    Luckily for you ProfG did this post as I was about to come home after seeing some friends who pointed this story out and was about to have a good old rant.

    It seems to me that we as educators must be failing in our ability to train young doctors the art of Dr.House. Is it just Bad Education?

    However, maybe this is a product of simply GPs being too cheap?

    With budgets in the hands of GPs they do everything in their power not to spend any money so having an MRI scan-no chance.

    I know and have two good examples....I was suffering from pain and neuros at work, said get referred to us and we can do a a simple test to identify the source of the pain....but was told by a GP that it was too expensive to see a neurologist and there was no way they would approve a scan.

    Next up too cheap to investigate........but eventually forced to do tests by another healthcare professional to find the undiagnosed broken neck 6 months later....the advice now from consultant is you are too old for us to bother doing anything "make sure you don't fall over". If they had spent a few pounds doing a simple x-ray at the time, no need for a scan, may be there wouldn't be pain for life.

    Is there a wonder that the UK is now becoming a state of litigious ambulance chasers.

    Finally, no diagnosis of MS means no access to expensive MS drugs,

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  2. I am surprised that this hasn't improved from my own experience in the 80s/90s. I've had MS since I was around 15 I believe, as that's is when I started getting intermittent tingling/buzzing and fatigue, at the time my bouts of fatigue were put down too much studying or anaemia, even though I never tested positive for this. It wasn't until I was 22 and having met a couple of people with MS, that the penny dropped and for the next 10 years I was treated like a mad person by neurologists who did not believe me. A lot of clues were ignored. In the end I paid privately for tests/MRI. And finally got my diagnosis of RRMS. Even to a few years ago, I'd dread seeing a new neurologist as they'd want to do a new work up. Despite having a positive spinal tap, various MRIs showing copious classic MS lesions and having lost my sight a couple of times, central balance, use of my dominant hand; but it seems on the whole, I always go back to near baseline. I'm still RRMS and have little - obvious - disability. So I can understand how difficult it was in my particular case to diagnose, however if an MRI had been done all those years ago, I suspect it would have been a lot clearer, as when I finally got them done, it showed some very old lesions.

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  3. What I find disturbing is I think back and around 80% of my appoinments with doctors there has been some mistake made.
    With GP's it's either the diagnosis is wrong, the treatment is wrong, the referral to the hospital is wrong (i.e it should be same day referral not choose and book, are they trying to save money?), the instructions for using the treatment is wrong. With neuro registrars in my experience they do not ask enough standard neurological questions that need to be asked and get away with writing no medical examination notes (is that even legal)!!
    What chance do we have unless we become expert patients before we have become well.

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  4. Should say on last line before we have become unwell.
    I didn't know what MS was before I was diagnosed.

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  5. GP means 'guess practitioner'.

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    1. Maybe the solution is to see a vet instead of a GP. As Kramer from Seinfeld says "Oh, I’ll take a vet over an M.D. any day. They gotta be able to cure a lizard, a chicken, a pig, a frog - all on the same day."

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  6. This is important data; we need timely accurate diagnosis of MS. It is important also to consider the other side of the coin - those people who are given an incorrect diagnosis of MS, often from over-interpretation of non-specific MRI changes. Any push for faster diagnosis tends to risk over-diagnosis. At least one person has died from DMD complication and was found to not have MS.

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  7. I would be interested to know the stats on this. It has certainly not been my experience (see my comment at 10.12 am). I've been screened for just about every differential over the years, both before and after diagnosis. Really the most over-cautious and anxiety inducing process ever in my opinion. Yes, I understand the need to be cautious (perhaps not to the extent many individual experience though)and that is also why I find it somewhat amazing that someone could be given an incorrect diagnosis and then a DMD in the UK. Again having been told so many times, I was not eligible for a DMD because these were for 'sick people', I'd love to know where these gung ho neurologists reside!

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    1. Oops, this was in reply to 'Dr Giles' comment at 11.53. I thought I'd hit reply (writing on my phone).

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    2. Misdiagnosis of multiple sclerosis: frequency, causes, effects, and prevention.
      Solomon AJ, Weinshenker BG. Curr Neurol Neurosci Rep. 2013 Dec;13(12):403. doi: 10.1007/s11910-013-0403-y. Review.

      The proportion of cases of patients who received a diagnosis of MS that is ultimately judged to be a misdiagnosis has been estimated to be 5 %–10 % However, data concerning frequency and reasons for misdiagnosis are limited

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    3. I'm sure it happens but to be misdiagnosed to such an extent that an individual is given a DMD, must be quite rare! And then to die from this. According to "Dr Giles" , this was "at least one" seems even more unlikely to me. When I think back to how impossible it was for me to get any treatment, beyond steroids, I really do wonder how this can happen. Anything is possible but I don't think this negates the fact more people are waiting years to get their diagnosis and meanwhile their MS advances.

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  8. My gp was actually exceptional and dare I say more informed than the general neurologist I saw before seeing the Ms team. It's a hard disease to diagnose as it mimics so many other conditions. If GPs referred every single person who presented with dizziness the nhs would implode. It takes time to recognise the patterns. Perhaps a private health system would be picking up Ms sooner as everyone gets an Mri with a headache in the states but that is not appropriate or affordable in the nhs.

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    1. Don't you believe that Private will mean an earlier diagnosis. I've seen experience of both and it aint that simple.

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    2. Me too! By going private, it was the only way I could get MRIs done but as an EP was normal, the neurologist wavered immensely and got two other neurologists involved (very well known experts) and meanwhile the costs were ratcheting up. No, it really doesn't always mean an earlier diagnosis.

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    3. One thing with going private though is you get to see a consultant neurologist not registrar. That is in the terms and conditions that I have seen.
      I have had bad experiences with registrars, they lack experience and knowledge. I know they need to learn on the job. This may be ok for appointments with patients who know their condition well and know what needs to be discussed and examined. But for me I got to see a registrar for my first symptom and then diagnosis and it would of been helpful if the supervisior examined me after the registrar at both appointments. I had no idea I had MS at the time, I didn't know what MS was and what would be relevant to tell them. Not enough standard neurological questions were asked by the registrars.

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    4. All the NHS registrars I saw in the early years of my MS are all eminent consultants all over the place now. They now have grey hair. I had every confidence in them.

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    5. So all men then, they don't dye their hair :-)

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    6. Oi! Some women don't dye their hair, including some very good female neurologists ;)

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    7. LoL I feel suitably rebuked....apologies ladies:-)

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    8. I am the anon at 11.42am. The reason why I had a bad experience was because I didn't know at the time what would be relevant to tell the registrar. I had no medical or neurological knowledge then. The registrar didn't ask me if I was sleeping ok or had a recent infection or illness. He laughed when I told him I had a nasty head bang and got euphoria for two hours. He said it wasn't relevant. I wasn't sleeping ok and was getting 2hrs sleep a night, I was living in a shared property with tenants up until 4am for many weeks. I had hyperacusis and hypervigilence. I was getting more unwell each day and deteriorated badly and had to revisit the hospital two days later. This should of been something that was picked up in the first consultation.
      I had a severe relapse two days later :(

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  9. I've been diagnosed twice now but the first time was super fast. I skipped the GP route due to the nature of my symptoms and was diagnosed in hospital. As it was I did not meet the dissemination in time criteria and was re diagnosed as CIS by a different neurologist some time later.

    I've recently been diagnosed again and this only came about as I asked for another MRI. If I hadn't asked for one I would still be walking around as CIS due to no further symptoms. As it is this has made me eligible for treatment so I feel like I've bought myself some time. Waiting for a second relapse makes no sense to me.

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