![]() Could you have been given the wrong diagnosis? Up to 5% of those diagnosed with Multiple Sclerosis don't have the disease at all. They have something called antiphospholipid syndrome or ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as "Sticky Blood Syndrome". This finding from a study by a leading team of British researchers at St Thomas’ Hospital in London. Instead of having MS, these patients could be suffering from this relatively new disease which mimics some symptoms of MS. Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat. What is Hughes Syndrome? Hughes Syndrome is the common autoimmune disease that makes blood more sticky or thick and therefore more prone to clotting in both veins and arteries. Lack of awareness of this condition means it is often missed or overlooked. Sticky blood can affect old and young, men and women alike and is found in all countries. No one knows what causes it although there is evidence that there is a genetic link. Current research shows Hughes Syndrome is responsible for a fifth of strokes under 45 years, a fifth of cases of deep vein thrombosis, including so-called ‘economy class syndrome’. It is the cause of 1 in 5 recurrent miscarriages. Hughes Syndrome can also mimic Alzheimer's disease, ME, and is linked to migraine. If it is left untreated sticky blood can kill. MS the wrong diagnosis? The St Thomas's Hospital found that up to one-third of patients coming to their clinic did not have MS at all, but Hughes Syndrome. Doctors there were seen numerous patients who had been told they had MS and were confined to a wheelchair having lost the use of their legs. They were subsequently re-diagnosed as having Hughes Syndrome. Within weeks, and in some cases days of starting on the blood-thinning drugs they were out of their wheelchairs and walking. Prompted by a growing number of patients coming to the clinic who had been told they had MS when they didn't, the team at the Rayne Institute questioned a sample of 250 patients with Hughes Syndrome. They found that almost a third of them had originally been told they had MS. Dr Graham Hughes, the British physician who first identified the condition (hence the name) is concerned by these findings. Dr Hughes says sticky blood is dangerously under-diagnosed and believes there is an urgent need to raise levels of awareness among the medical profession and the public.
Dr Hughes wants to see more research to establish how the people of being wrongly diagnosed.
How Hughes Syndrome mimics MS Symptoms include problems with:
How can you tell the difference between MS and Hughes Syndrome? Dr Hughes says there are clues that will help point to sticky blood:
If any of these are present then the blood should be tested for Hughes Syndrome. Dr Hughes and his team have developed two inexpensive blood tests that are available at most laboratories and will show the presence of sticky blood. Further Information Living with Hughes Syndrome’ - Your essential guide to ‘Sticky Blood’. Contact: The Hughes Syndrome Foundation:
|
I guess that's why they call it the Hughes | |
How one man's sleuthing has led to the most important medical breakthrough you've never heard of....... Read/download the article: I guess that's why they call it the Hughes
|
|
MS report 'risks giving patients false hope' | |
Multiple sclerosis campaigners today questioned reports claiming that hundreds of people have been misdiagnosed with the disease. The Multiple Sclerosis Society warned that the vast majority of people with this progressive disease of the nervous system should not draw false hope from claims that 5% of them in reality have a less serious condition. An article in today's Times suggested that hundreds of people who had been told they have MS could be suffering from Hughes Syndrome - a condition that leads to dangerous blood clotting but which can be easily treated if recognised. Hughes syndrome can lead to problems with the supply of oxygen to the brain, causing neurological symptoms similar to those associated with MS. But, unlike MS, Hughes syndrome can be treated with blood-thinning drugs. The Times article, based on figures from the Hughes Syndrome Foundation - www.hughes-syndrome.org , reported a number of "seemingly miraculous recoveries", with patients regaining the ability to walk after being treated for Hughes syndrome rather than for MS. But a spokesman for the MS Society said: "These cases should not offer false hope to the vast majority of people with MS who have been properly diagnosed". He added: "There are a very, very few cases where people have been misdiagnosed with MS when they actually have got Hughes syndrome. There is a simple blood test that can be made to avoid any doubt." The MS Society spokesman also questioned the Hughes Syndrome Foundation's figures. "We would like to know where the figure of 5% came from and what solid evidence there is for it." The foundation's manager, Kate Fitzpatrick, admitted that the figure was based on anecdotal evidence. But she insisted that "hundreds" could have been misdiagnosed with MS. "We don't want to get patients' hopes up, but if they do have any doubts they should get tested," she said. Around 100,000 people in Britain have MS. Up to 150,000 could be suffering from Hughes syndrome. Source: Guardian Unlimited © Guardian Newspapers Limited 2006
|
|
Man with MS hopes for a reprieve | |
A former motorcycle racer diagnosed with multiple sclerosis (MS) 26 years ago believes he has been saved from ending his life in a wheelchair. John Simper, 60, from Ipswich, is convinced he has been suffering from Hughes Syndrome which thickens the blood and slows down the brain. Mr Simper has now started a crusade to make the condition more well known. He believes other people who have been told they have MS may have Hughes Syndrome. More than 150,000 people in the UK have the condition, which also causes recurrent miscarriages and chronic migraine. "When I first heard about it I contacted my doctor and he had never heard of the condition," he said. People with Hughes Syndrome suffer abnormal movements, dizzy spells, short-term memory loss, headaches and angina. For more than a quarter of a century Mr Simper has been in fear of ending up in a wheelchair or even dying. 'Wary of developments' Mr Simper said that his problems began after he was seriously assaulted and knocked out in 1980. He had a legacy of injuries to all parts of his body from crashes as a motorcycle racer. "The tests for MS are a matter of eliminating other conditions and I had nothing else. "Then a few months ago my daughter drew my attention to an article about Hughes Syndrome. I'm wary of new developments in my condition but asked my doctor about it and he had never heard of it. "Now I am doing all that I can to make people aware. "I'm not jumping up and down with joy yet because I am going to have my first referral at St Thomas's Hospital in London, which is the main treatment centre, in October. "I have spoken to neurological hospitals, other GPs and even NICE to draw attention to the condition. "It could save the government millions of pounds on care and drugs if many people diagnosed with MS have Hughes Syndrome instead." Causes miscarriages A spokeswoman from the Hughes Syndrome Foundation - www.hughes-syndrome.org said the condition was discovered by Dr Graham Hughes when a group of people he was treating for Lupus, the immune-system disease which is his speciality, did not fit the classic mould. After painstaking detective work he found they all had a strange antibody in their blood which caused it to thicken and clot. This caused less oxygen to reach the brain, body organs and the placenta in pregnant women. It accounted for migraine, one in five recurrent miscarriages, deep vein thrombosis in young people and many other conditions which could be treated by aspirin, heparin injections and in more serious cases with warfarin. Source: BBC Health News
|
|
Call for tests to avoid misdiagnosis of MS | |
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 100,000 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 patients 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." Source: Telegraph.co.uk © Copyright of Telegraph Group Limited 2006.
|
|
Your Questions Answered! | |
Q: What is Hughes Syndrome (HS)? A: A condition in which the blood is 'sticky' so more likely to clot, causing thrombosis. It is also known as Antiphospholipid Syndrome or APS. Q: Can you have MS AND Hughes Syndrome? Or does it have to be one or the other? Q: Is it worse to have MS, or Hughes Syndrome? Q: Should a test for HS be done routinely when MS is suspected? Q: How do you test for Hughes Syndrome? Q: Are the results of the blood test for Hughes Syndrome clear-cut? Q: Is the blood test the only way to get a certain diagnosis of HS? Q: The main way MS is diagnosed is by MRI scan. If white plaques show up, isn't that a sure sign that it's MS? Q: How well known is Hughes Syndrome amongst doctors? Q: What if someone's GP didn't know what to do if they prove positive for Hughes Syndrome? Q: What percentage of patients diagnosed with MS have actually got Hughes Syndrome? Q: How does 'sticky blood' cause neurological problems similar to MS? Q: What are the main differences between MS and Hughes Syndrome? Q: What are the similarities between MS and Hughes Syndrome? Q: When someone was told they had MS, but it turns out they have Hughes Syndrome, what effect does this have on their lives? Q: What's the treatment for Hughes Syndrome? Q: Do diet and natural substances like gingko biloba, evening primrose oil, fish oils, garlic etc have the same blood-thinning effects as these drugs? Q: Is it dangerous not to treat Hughes Syndrome? Q: If you've got Hughes Syndrome, what will MS treatments like beta interferon do for you? Q: If you've been told you've got MS but then turns out to have Hughes Syndrome, can you regain your former abilities once you start on treatment? Q: In Hughes Syndrome, is it the blood that's sticky, or something about the blood vessel walls which makes the blood stick to them? Q: In Hughes Syndrome, there is a problem with blood coagulation, platelets and phospholipids. But isn't that also the case with MS? Q: If someone with MS also has a problem of coagulation, could they benefit from going on the drug treatment for Hughes Syndrome? Q: What research is going on into the links between MS and Hughes Syndrome? Q: Some readers are confused about their blood test results. eg "I have a reading of 10. Does that mean that I have half MS and half Hughes Syndrome?" Q: At what level does a blood test become conclusive for Hughes Syndrome? Q: Can it mean - as some readers are suggesting - that some patients with MS have a coagulation problem? Symptoms which could be MS or HS
More Likely in Hughes Syndrome
What Makes MS Different?
Further Information Hughes Syndrome Foundation
|
Related Items |
Candida and MS |
Devic's Disease & NMO (neuromyelitis optica) |
Epstein-Barr Virus |
Leaky Gut |
Leukodystrophies |
Osteoporosis |
Type 1 Diabetes |
Did you find this information useful? Would you like to comment on this page? Let us know what you think! We welcome all comments and feedback on any aspect of our website - please click here to contact us. |