This Is MS Multiple Sclerosis Community: Knowledge & Support

Call for tests to avoid misdiagnosis of MS
(Filed: 31/07/2006)

Two decades after a British doctor discovered a syndrome that can easily be mistaken for multiple sclerosis, he warns today that hundreds of people may still be wrongly diagnosed because simple tests are not offered as a matter of routine.

The rheumatologist Dr Graham Hughes reported in the British Medical Journal in 1983 that he had identified the syndrome - now called Hughes Syndrome - that resulted in blood becoming sticky, leading to potentially dangerous blood clots.

Evidence has emerged that it could cause one in five recurrent miscarriages, as well as one in five strokes in younger people, and one in five DVTs (deep vein thromboses).

The good news is that, unlike multiple sclerosis (MS) - which affects 85,00 Britons - the syndrome can usually be treated with blood-thinning drugs such as aspirin and warfarin.

"It is still totally under-recognised," says Dr Hughes, now a professor at the London Lupus Centre. He estimates that five per cent of MS sufferers may be misdiagnosed.

For 26 years, John Simper, 60, from Ipswich, Suffolk, thought he would suffer the slow degeneration of MS, only to find he had Hughes Syndrome.

After the first blood tests came back positive a few weeks ago, he began campaigning for the test to become routine so some of the other estimated 150,000 people with the syndrome can be diagnosed. "The Government has to take notice," he said.

Few GPs are alert to the condition and lack of knowledge causes thousands of people to suffer needlessly, not only by thinking they have MS but, in the case of female sufferers, by having unnecessary miscarriages, said Prof Hughes.

He recommends that two simple blood tests be routinely offered to any MS patient who has suffered recurrent headaches, problems with clots such as DVT, a family history of autoimmune diseases, or who has had recurrent miscarriage.

Once the syndrome is diagnosed, aspirin, or anticoagulants such as heparin and warfarin, produces a dramatic reduction in symptoms in 80 per cent of patients, he said.

Dr Alasdair Coles, of Cambridge University, praised Prof Hughes's work, but said: "With modern techniques and careful inquiry, the number of people incorrectly diagnosed with MS is low."

The Department of Health was "not aware of any evidence that population screening would be beneficial".

Hazel Edwards, 48, of North Wales, was diagnosed with MS five years ago and ended up paralysed from the neck down.

She is now able to walk again, having been correctly diagnosed by Prof Hughes.

"As soon as I started warfarin, my memory improved and I found I could walk. I can drive and go to the gym. Prof Hughes and his team gave me back my life. But I feel very let down. My first symptoms of Hughes emerged 28 years ago."

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Orig post:
http://www.telegraph.co.uk/connected/ma ... ghes31.xml

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Dunmann.

Dr Coles is one of my neuros and I would support his view. The Hughes Syndrome story has done the rounds before and gives a hope to those with MS that they might have another disease which can be easily treated (please be me!). In reality MS is diagnosed using clinical tests and MRIs. But wouldn't it be nice if MS could be treated with an aspirin.

Ian

oo

just a point of clarification, ms is not officially diagnosed until relapse occurs, in spite of whatever tests put you into a 'majority' category, am i right?

oo

I'm guessing they diagnosed her based on criteria #2, or modification of #2, based on multiple lesions in different locations that may appear to be different ages. I think that is the basis for a lot of people posting to the site who have had only one clear attack but multiple lesions. I know my own diagnosis came from the MRI - if no MRI I would not have gotten the diagnosis.

oo

dissemination in time, more than one attack separated by at least a month, that sounds precisely like you have to wait for the second attack/exacerbation/relapse to be officially diagnosed...

oo

I only had one attack and was diagnosed after MRI discovered the spinal lesion and the white patches in the brain - also the spinal tap found myelin in the spinal fluid.

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Irish blood, English heart, this I'm made of
There is no-one on earth I'm afraid of
And I will die with both my hands untied
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Well with all due respect I disagree that "with modern techniques " the misdiagnosis is not made.

As a recent example, I spoke with a woman newly diagnosed with MS just a few months ago that had had several miscarriages and a stroke at the age of 30. She was deciding which CRAB to take. I said to her good grief you've got hughes not MS and I, a nurse with a knowledge of the existance of hughes not her MS neuro with "modern techniques", was right as further testing proved out. Her MS diagnosis was given after several "events" of new symptoms (which were actually flareups of Hughes not MS). Can you imagine the insanity of her taking a CRAB?

See this pubmed research <shortened url>



We need to be aware of this kind of material and it is very appropriate that it is posted here in thisisms. Obviously, in spite of self assurance, the point of this research is that skilled practitioners can't tell the difference between MS and Hughes. It is important to acknowledge this and actually look for it and make sure.
marie

oo

Oops! Forgive me for my lack of clarity, I should have quoted the section of interest.


I believe very few of us might have this misdiagnosis issue, but it is not false hope to talk about it here. As I mentioned I ran into it recently with a newly diagnosed MS patient whose history suggested she had Hughes. So much for modern diagnosis! It does not hurt to do the simple blood test as part of the workup, and this is Dr Hughes point.

marie

oo

there is alot of hope here and not much reality , i'm just glad i have got to the stage of dealing with the facts...