OT - (1) Syndrome misdiagnosed as MS, and; (2) Jelina, MSWalk

[Guest guest]

Hello to all,

(1) The information below details how Syndrome can be misdiagnosed as MS

- and warns Syndrome

carries a heightened risk of stroke - so it's in everyone's best interest to

read.

(2) Jelina of MSwalk.net, recently updated the LDN topic on her 'Alternative

Treatments' page. Jelina would

like to enhance her knowledge of LDN and will be rejoining the LDN group:

http://www.jelinab-mswalk.net/alternative_treatments.html

Kind regards,

Cris

________________________________________

The blood disease that mimics MS - Syndrome

Syndrome

The blood disease that mimics MS - Syndrome

Could you have been given the wrong diagnosis?

By Judy Graham

Up to 5% of those diagnosed with Multiple Sclerosis don't have the disease at

all. They have something called

' 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 '

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, Syndrome can affect mobility, memory, the speech and the nervous

system. But the differences.

Syndrome is easy and cheap to treat.

What is Syndrome?

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 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. 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 's Hospital found that up to one-third of patients coming to their

clinic did not have MS at all,

but 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

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

Syndrome. They found that

almost a third of them had originally been told they had MS.

Dr Graham , the British physician who first identified the condition

(hence the name) is concerned by

these findings. Dr 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

undiagnosed. We are just one group of doctors at one hospital.

If you consider that we have almost 900 patients who have 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 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 Syndrome can be difficult to distinguish

between the two conditions. "

How Syndrome mimics MS

Symptoms include 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 Syndrome?

Dr 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 Syndrome.

Dr 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 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 Syndrome Foundation:

The Rayne Institute, St ' Hospital, London, SE1 7EH.

Webpage: www.hughes-syndrome.org

###

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 Syndrome - a condition that leads to dangerous blood

clotting but which can be easily

treated if recognised.

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, syndrome can be

treated with blood-thinning drugs.

The Times article, based on figures from the Syndrome Foundation -

www.hughes-syndrome.org, reported a

number of " seemingly miraculous recoveries " , with patients regaining the ability

to walk after being treated

for 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 syndrome. There is a simple blood test that can be made to avoid

any doubt. "

The MS Society spokesman also questioned the 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 85,000 people in Britain have MS. Up to 150,000 could be suffering from

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.

Simper, 60, from Ipswich, is convinced he has been suffering from

Syndrome which thickens the

blood and slows down the brain.

This condition, discovered in 1993, mimics MS but can be easily treated with

blood thinning drugs or aspirin.

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

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 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

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 '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

Syndrome instead. "

Causes miscarriages

A spokeswoman from the Syndrome Foundation - www.hughes-syndrome.org

said the condition was discovered

by Dr Graham 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 reported in the British Medical Journal in

1983 that he had identified the

syndrome - now called 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 85,000

Britons - the syndrome can

usually be treated with blood-thinning drugs such as aspirin and warfarin.

" It is still totally under-recognised, " says Dr , now a professor at the

London Lupus Centre. He

estimates that five per cent of MS patients may be misdiagnosed.

For 26 years, Simper, 60, from Ipswich, Suffolk, thought he would suffer

the slow degeneration of MS,

only to find he had 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 .

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 '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 , 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 .

" As soon as I started warfarin, my memory improved and I found I could walk. I

can drive and go to the gym.

Prof and his team gave me back my life. But I feel very let down. My

first symptoms of emerged

28 years ago. "

Source: Telegraph.co.uk © Copyright of Telegraph Group Limited 2006.

###

Your Questions Answered!

Q: What is 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 Syndrome? Or does it have to be one or the other?

A: It's probably one or the other. But they may have things in common which need

further investigation.

Q: Is it worse to have MS, or Syndrome?

A: HS is easily treatable. However, if HS is left untreated, you could have

thrombosis or a stroke.

Q: Should a test for HS be done routinely when MS is suspected?

A: Yes! It's a tragedy that people are wrongly diagnosed with MS when

Syndrome is so easy a cheap to

treat. To get a test for HS, you have to ask your GP.

Q: How do you test for Syndrome?

A: There are two simple blood tests. Anticardiolipin Antibodies and Lupus

Anticoagulant. If you have HS, it

means your immune system is producing proteins, or antibodies, that make the

blood far more stick than normal.

Q: Are the results of the blood test for Syndrome clear-cut?

A: The blood tests can give a range of results from 'weak positive' to 'strong

positive' But we don't dismiss

someone with a weak positive result. Also, only one of the two blood tests needs

to be positive.

Q: Is the blood test the only way to get a certain diagnosis of HS?

A: Yes, at the moment.

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?

A: No. White dots can show on an MRI with HS too. So it can be difficult to tell

the difference between MS and

HS from an MRI scan. These just show anatomical lesions.

Q: How well known is Syndrome amongst doctors?

A: Despite the fact that the syndrome is now 20 years old, some doctors have

still not heard of it.

Q: What if someone's GP didn't know what to do if they prove positive for

Syndrome?

A: The GP should get in touch with us and ask for a brochure about our GP

Programme. I have also written a

book for doctors. Patients can be referred from anywhere to St 's.

Q: What percentage of patients diagnosed with MS have actually got

Syndrome?

A: We don't know the exact percentage. A conservative estimate is said to be 5%.

It could be more. We are

working with MS clinics to find out. At our clinic at St 's Hospital in

London, 32% of patients with HS

were originally diagnosed with MS.

Q: How does 'sticky blood' cause neurological problems similar to MS?

A: Sticky blood is like petrol in a car that's too thick and the engine

stutters. If the blood is too sludgy,

the brain is affected. So is the placenta in pregnancy. If the brain does not

get the oxygen it needs, you get

neurological symptoms. If it's severe, then you get ischaemic lesions which show

up on an MRI scan. These can

certainly cause problems with walking, for example.

Q: What are the main differences between MS and Syndrome?

A: In HS, patients have a history of previous thrombosis - blood clots, a high

chance of miscarriages during

pregnancy, headaches are very prominent, and maybe blotchy rashes on the skin of

the knees and forearm.

Q: What are the similarities between MS and Syndrome?

A: Clinically, there is considerable overlap, but the cause is different.

Q: When someone was told they had MS, but it turns out they have

Syndrome, what effect does this have

on their lives?

A: It's a tragedy. Some of our patients who have been given the label of MS have

lost so much in their lives.

But they could have been treated so easily.

Q: What's the treatment for Syndrome?

A: Aspirin, or the blood thinning drugs heparin or warfarin.

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?

A: They have a mild effect but they certainly wouldn't get the same effect as

the drugs. Anyone diagnosed with

HS should definitely take one or other form of anticoagulant.

Q: Is it dangerous not to treat Syndrome?

A: Yes. Syndrome is too dangerous not to treat as there is a high chance

of clotting. Over a 10 yr

period, 50% get thrombosis. This could cause a stroke which could leave them

paralysed, or it could be fatal.

Q: If you've got Syndrome, what will MS treatments like beta interferon

do for you?

A: They won't work

Q: If you've been told you've got MS but then turns out to have Syndrome,

can you regain your former

abilities once you start on treatment?

A: Obviously, the sooner you start treating someone the

better. It's also easier to treat younger people than older people. For some

patients, their symptoms

disappear within weeks of starting on anticoagulant drugs and there's no

neurological progression. With more

disabled patients, it depends how much disability there is. You can get some

reversal of symptoms, and

physiotherapy helps.

Q: In Syndrome, is it the blood that's sticky, or something about the

blood vessel walls which makes

the blood stick to them?

A: It's probably a fault in the blood itself. The blood is thicker than it

should be. We don't know the

precise reasons why.

Q: In Syndrome, there is a problem with blood coagulation, platelets and

phospholipids. But isn't that

also the case with MS?

A: There are similarities and could be certain common factors.

Q: If someone with MS also has a problem of coagulation, could they benefit from

going on the drug treatment

for Syndrome?

A: It's conceivable.

Q: What research is going on into the links between MS and Syndrome?

A: Research is going on throughout the world. Our unit at St ' is

currently carrying out collaborative

research projects with colleagues in Japan, Italy, Spain, Israel and France.

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 Syndrome? "

A: No.

Q: At what level does a blood test become conclusive for Syndrome?

A: Each laboratory gives its own 'negative' and 'positive' range. If the reading

gives an unclear result, it

should be repeated.

Q: Can it mean - as some readers are suggesting - that some patients with MS

have a coagulation problem?

A: No, some patients who've been told they've got MS don't have MS at all; they

have Syndrome - a

coagulation disorder. The treatment for that is aspirin or warfarin.

Symptoms which could be MS or HS:

Pins and Needles

Vertigo

Eye problems

Ataxia (staggered walk)

Loss of sensation

Muscle weakness

Movement disorder

Difficulty walking

Bladder incontinence

Speech Difficulties

Fatigue

Depression

More Likely in Syndrome:

Blood clots/Thrombosis

Headaches/Migraine

Strokes/Heart attacks

Memory loss

Recurrent miscarriage (Not universal)

Blotchy rashes on skin

Aches, pains, cramp

Low platelet count

Dry eyes

What Makes MS Different?:

Attacks on myelin

Relapses and remissions (in most cases)

Degenerative

Further Information:

Syndrome Foundation

The Rayne Institute

St ' Hospital

London SE1 7EH

Tel: 0207 188 8217

Website: www.-syndrome.org

Email: hsf@...

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Sunday, 10 February 2008 The MS 24 Hour Telephone Counselling Service 0800 783

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