warnings in 2006 re misdiagnsis of ms and not hughes syndrom

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warnings in 2006 re misdiagnsis of ms and not hughes syndrom

Postby goodtotalk » Sat Nov 19, 2011 6:33 am

more recent info
http://www.mymultiplesclerosis.co.uk/hu ... drome.html

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Warning back in 2006- hughes syndrome
News
Call for tests to avoid misdiagnosis of MS
Hazel Edwards
Hazel Edwards was wrongly diagnosed with multiple sclerosis and ended up paralysed in a wheelchair
By Roger Highfield, Science Editor
12:01AM BST 31 Jul 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."
Last edited by goodtotalk on Sat Nov 19, 2011 4:40 pm, edited 1 time in total.
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Re: warnings in 2006 re misdiagnsis of ms and not hughes syn

Postby ssmme » Sat Nov 19, 2011 7:28 am

Unfortunately I don't fall into that 5%. I take a baby aspirin every day and took clopidogrel for 6 months after CCSVI treatment. I'm curious to know if anyone out here finds themselves in the 5% after years of an MS dx.
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Re: warnings in 2006 re misdiagnsis of ms and not hughes syn

Postby goodtotalk » Sat Nov 19, 2011 7:46 am

5% worldwide is a lot of people
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Re: warnings in 2006 re misdiagnsis of ms and not hughes syn

Postby ssmme » Sat Nov 19, 2011 2:02 pm

There are basically several million ms dx'd patients in the world. 5% +/- of those isn't that terribly many in the grand scheme of things. I'm just thinking that this is a false hope to the other 95% +/- of patients. I wish we were all more focused on the cause of ms and ways to prevent/cure it - not focused on the few that have a mis-diagnosis. I'm happy that some few people find that they don't actually have it but the rest of us aren't so lucky. Chasing slight chances won't help most of us and gives us false hope and many dissappointments. Maybe we need to create a forum about possible mis-diagnosis's. I don't mean to be abrupt but after years of this disease I find these types of posts cluttering and taking away from the cause/cure focus.
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Re: warnings in 2006 re misdiagnsis of ms and not hughes syn

Postby goodtotalk » Sat Nov 19, 2011 2:35 pm

Marcia,

ok no probs, no more posts.

I'm not here to irk anyone

but it was 5 years ago, new stats today may be higher
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