Hughes Syndrome
The blood disease that mimics MS- Hughes Syndrome
Could you have been given the wrong diagnosis?
By Judy Graham
Up to one-third of those diagnosed with MS don't have the disease at all. They have something called ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as sticky blood Syndrome.
This finding from a new 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 pounds, 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.
"The study makes us feel very strongly that there is a group of MS patients who in fact have a different disease which is treated totally differently and very successfully.
What concerns us at the clinic is that we do not know how many patients amongst the wider population remain and diagnosed. We are just one group of doctors at one hospital.
If you consider that we have almost 900 patients who have Hughes Syndrome, that means 300 were told they had MS. If you broaden the picture you can soon see how this could affect a large number of people.”
Dr Hughes wants to see more research to establish how the people of being wrongly diagnosed.
“We believe there is an urgent need for a major collaborative study of the link between the two diseases. Doctors need to be more aware of Hughes Syndrome can be difficult to distinguish between the two conditions.”
How Hughes Syndrome mimics MS
Symptoms:
Problems with:
- Mobility- difficulty in walking, tripping and dragging foot
- Vision- double vision
- Tingling feelings
- Fatigue,
- Balance
- Speech
- Memory
How can you tell the difference between MS and Hughes Syndrome?
Dr Hughes says there are clues that will help point to sticky blood:
- recurrent headache or migraine
- previous thrombosis
- recurrent miscarriage
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.
| Info box
‘Living with Hughes Syndrome’-
Your essential guide to ‘Sticky Blood’. By Triona Holden, a former BBC News Presenter. Published by Sheldon Press £6.99. Available from bookshops.
Contact: The Hughes Syndrome foundation:
The Rayne Institute, St Thomas' Hospital, London, SE1 7EH.
Webpage: www.hughes-syndrome.org
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Reprinted with Permission
