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Medical Forum / Diseases and Disorders / Lupus / September 2006

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Hundreds, in UK, misdiagnosed with MS and could have Hughes Syndrome  instead

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J - 05 Sep 2006 15:53 GMT
I saw this posted on the MS newsgroup.  So no matter what country you're
in, if you have Lupus like signs or symptoms or MS like signs or symptoms,
make sure you're (also) properly tested for Hughes Syndrome.
J-not expert on this.  Andy?  What do you  make of this? that sometimes
both tests are negative?  Keep getting tested?   And/or your comments?
J

<http://www.itv.com/news/britain_7acdaee7262141dfefe3924fb0f2dfea.html>

Hundreds misdiagnosed with MS'
2.33, Thu Aug 31 2006

A doctor has called for multiple sclerosis sufferers to be tested for a
condition which has the same symptoms but can be treated with an aspirin.

Dr Graham Hughes has called for MS sufferers to be given routine blood
tests to rule out a condition called Hughes Syndrome.

MS is the most common disabling disease that affects nearly 85,000 people.
Dr Hughes said around 5 per cent of sufferers could have been misdiagnosed
and could have Hughes Syndrome instead.

Dr Hughes, now a professor at the London Lupus Centre, was the first to
report the syndrome in the British Medical Journal in 1983.

Those with the syndrome have abnormally "sticky blood" which can cause
clotting. Their symptoms can include headaches, migraines, memory loss and
loss of balance, similar to a neurological condition like MS.

Professor Hughes said: "The syndrome can affect any organ in the body, but
when it affects the brain it can cause symptoms similar to those suffered
by people with MS.

"Sufferers get headaches or migraines, or their balance goes wrong or they
get pins and needles. It can affect people quite badly and they will
suffer something like a stroke or a deep vein thrombosis."

It is said to be the cause of as many as one in five miscarriages and one
in five strokes in people aged under 45.

But a simple test can establish if a person is suffering from Hughes
Syndrome.

It can be treated with aspirin or warfarin, and doctors have seen
miraculous recoveries in some cases.

The Hughes Syndrome Foundation can be contacted on 020 7188 8217 or visit
www.hughes-syndrome.org.
____________________________________
From: http://www.hughes-syndrome.org/diagnosis.htm
Making the diagnosis     The diagnosis depends on the history, the
examination, and special tests. The doctor will ask about clotting
problems in the past (any history of clots in the leg or lung), previous
strokes or heart attacks (and whether they occurred at young ages), less
specific clues such as headaches, migraine, memory loss, and confusion.
Women will be questioned about past pregnancies, and whether there were
any complications. They will be asked specifically about any miscarriages,
and at what stage of pregnancy they occurred.

A lacy, net-like, red rash known as 'livedo reticularis' (some patients
call this corn beef skin!), is often found in antiphospholipid syndrome,
particularly over the wrists and knees.

A simple blood test can detect the 'antiphospholipid antibodies'. Other
blood tests can check for underlying conditions, such as lupus. The doctor
may also assess other risk factors for thrombosis - by measuring the
patients blood pressure to rule out hypertension, checking their glucose
levels to rule out diabetes and measuring cholesterol levels.

The blood tests for Hughes Syndrome have complicated names but are
essentially simple and universally available through your doctor/GP. There
are two tests – anticardiolipin antibodies  and the confusingly named
lupus anticoagulant.*

Screening test for Hughes Syndrome <see the wevbpage for the chart>
* The confusing term ‘lupus anticoagulant’ should be done away with. It
is NOT a test for Lupus and is NOT an anticoagulant. But it is a
historical term, and so far has stuck. Confusion is added to by the
variety of clotting tests used in different laboratories with
abbreviations including KCT, KCCT, DRVVT and so on. A topic best left to
the haematologists.

Of these two tests, the first is far more important and more frequently
positive – but because nature can be awkward, some patients have only one
or other test positive – hence the need to test for both.

Having said this, we do see some patients who appear to have Hughes
Syndrome in whom both tests are negative.

It is usually advisable to repeat the blood tests on more than one
occasion – especially if the results are ‘borderline’ or ‘doubtful’. One
positive test for antiphospholipid antibodies does not mean that a person
has Hughes Syndrome. For this reason, the test should be repeated after
6-8 weeks. A positive test on two occasions is much more important for
doctors making the diagnosis than a test that is only positive once.

Tests that are only just positive and that are present on only one
occasion may not be significant. This is because harmless antiphospholipid
antibodies can be detected in the blood for brief periods, occasionally in
association with a wide variety of conditions, including infections and
certain drugs (e.g. antibiotics and certain blood pressure pills).

In making the diagnosis, the patients history is often more important than
the actual test results – for example, a 40 year old with a DVT and lung
clot may not link it with the teenage migraine she suffered, or the two
previous miscarriages. These points may seem pedantic but Hughes Syndrome
is a diagnosis, which if made early, can totally turn around the prognosis
from a potentially life threatening disease to a relatively normal life.
___________________________________________
That's what the news item and one  web page says.
J
Andy - 12 Sep 2006 14:48 GMT
In article <44FD8F7B.E6EB2F6E@execulink.com>, J <freeware@anon.inv>
wrote
>I saw this posted on the MS newsgroup.  So no matter what country you're
>in, if you have Lupus like signs or symptoms or MS like signs or symptoms,
>make sure you're (also) properly tested for Hughes Syndrome.
>J-not expert on this.  Andy?  What do you  make of this? that sometimes
>both tests are negative?  Keep getting tested?   And/or your comments?
>J

Can't disagree with Dr H!

http://www.northeastlupus.org.uk/factsheets/faqs18.htm says

       Hughes' syndrome (antiphospholipid syndrome): This is often
       called "sticky blood" in that patients have a tendency to clots,
       both in the veins and arteries. The thrombosis may present
       either dramatically, or over a period of time with clots in
       major vessels, even including the brain. It is vital that this
       diagnosis is made (a simple blood test for antiphospholipid
       antibodies is available in most major hospitals). Pregnant women
       who have antiphospholipid antibodies have a tendency to clot in
       the placenta and develop recurrent miscarriages and these can be
       prevented by diagnosis and treatment. Although this syndrome was
       first discovered in lupus patients it is now recognised that
       many, if not the majority of patients with Hughes' syndrome,
       have no other features of lupus nor will they develop lupus in
       the future.

My brain's still on holiday, but I think that there are some of the
various tests that can indeed give false negative results; dunno if
that's a test failure or if whatever-it-tests-for is not always present.
(Q: how do I get rid of this nasty rash? A: book an appointment with a
dermatologist, and when you wake up on appointment-day the rash will
have gone!)
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

 
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