Could you have been given the wrong diagnosis?

[Guest guest]

I also know somebody whom was told she has CFS, but was subsequently

treated for Hughes Syndrom successfully. Also a couple of people whom have

MCS were also treated for 'sticky blood " .

blessings

Shan

The blood disease that mimics MS - Hughes Syndrome

 

Could you have been given the wrong diagnosis?

http://www.msrc.co.uk/index.cfm?fuseaction=show & pageid=736

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 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.

 

“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.â€

 

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.â€

 

How Hughes 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 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.

 

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?

 

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 Hughes 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 Hughes

Syndrome is so easy and cheap to treat. To get a test for HS, you have to ask

your GP.

 

Q: How do you test for Hughes 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 Hughes 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 Hughes 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

Hughes 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 Thomas's.

 

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

Syndrome?

 

A: We don't know the exact percentage. A conservative estimate is maybe 2%.

It could be more. We are working with MS clinics to find out. At our clinic at

St Thomas'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 Hughes 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 Hughes 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 Hughes

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 Hughes 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 Hughes Syndrome?

 

A: Yes. Hughes 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 Hughes 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 Hughes

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 Hughes 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 Hughes 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 Hughes Syndrome?

 

A: It's conceivable.

 

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

 

A: Research is going on throughout the world. Our unit at St Thomas' 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 Hughes Syndrome? "

 

A: No.

 

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

 

This email was cleaned by emailStripper, available for free from

http://www.papercut.biz/emailStripper.htm