Hughes syndrome

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Hughes syndrome

Postby frodo » Sun Feb 06, 2011 5:44 pm

I have not seen this here, and I think it is important. Hughes syndrome is a disease of the blood that makes it too thick. It seems that some patients with it have been misdiagnosed with "MS" (whatever that means).

http://www.msrc.co.uk/index.cfm/fuseact ... pageid/736

I have read here about a lot of people that get better after treatment and get worse after quitting blood thinners. Maybe this is the answer.
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Postby IHateMS » Sun Feb 06, 2011 6:13 pm

look in archives... pretty sure this has been discussed before
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Postby David1949 » Sun Feb 06, 2011 6:24 pm

"They found that almost a third of them had originally been told they had MS. "

That one third figure sounds familiar.
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Postby cheerleader » Sun Feb 06, 2011 6:25 pm

Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Sun Feb 06, 2011 9:12 pm

David, that's one third of Hughes patients, not one third of MS patients. Different patient population.
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Postby bluesky63 » Mon Feb 07, 2011 4:41 am

I've more often seen it called antiphospholipid syndrome (APS). It can be a major component of lupus. Cheer's links ae great. Here's another interesting link from oxford journals:

http://rheumatology.oxfordjournals.org/ ... 4/434.full

I think, to echo Cece, Judy Graham was explaining that 5 to 10 percent of people diagnosed with MS have been misdiagnosed in general and have some other explanation for their symptoms and/or lesions. I personally tell people this all the time -- many people do not get a thorough diagnostic evaluation. The differential for MS is huge!

And in the link you have there, she was indicating that a third of the misdiagnoses could be APS/Huhges.

Some neurologists/rheumatologists believe that there is a lot of crossover between lupus and MS. I had one neuro who told me he believes a number of his patients have what he would call "lupus sclerosis" with distinct features of both.

It's not that straightforward to test for it -- apparently the antibodies can shift, and it may take several blood tests with a knowledgeable doctor to get accurate results. Lupus. APS, and yes -- MS -- all of it is so weird and there is so, so much to learn. :-)

Thanks for bringing it up. :-)
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Postby CureOrBust » Mon Feb 07, 2011 5:37 am

I just hope I stay feeling like this. I am dreading the day they tell me I have to come off of the Clexane (I have been on it at 70mg for 7 months now) and I know the risk of osteoporosis is a real problem (I take calcium and vit D to try and combat this)
Also look into Vitamin K (and magnesium and strotium for strength). From my understanding Vit K works on a similar technique as Fosamax, Before my MS diagnosis I had CIDP diagnosis where regular prednisone was treatment (also bade for bone density). I ended up with low bone density for my age. I went on Fosamax for a year, and got well into normal range on DEXA exam. Though I have to admit, since I have been on Vit K, B3, Magnesium and strotium I have not had another DEXA, and I have been a little lazy with Calcium sups :oops: .
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Postby NHE » Mon Feb 07, 2011 5:49 am

CureOrBust wrote:Also look into Vitamin K (and magnesium and strotium for strength). From my understanding Vit K works on a similar technique as Fosamax, Before my MS diagnosis I had CIDP diagnosis where regular prednisone was treatment (also bade for bone density). I ended up with low bone density for my age. I went on Fosamax for a year, and got well into normal range on DEXA exam. Though I have to admit, since I have been on Vit K, B3, Magnesium and strotium I have not had another DEXA, and I have been a little lazy with Calcium sups :oops: .


Did you mean to write 'strontium'?


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Postby Cece » Mon Feb 07, 2011 9:22 am

LR1234, do you know for sure it's the clexane and not anything else or the effects of the procedure? I cannot remember, after all you went through, if you ended up with more open veins.

I think anyone experiencing improvements from the blood thinners would notice a dramatic drop as soon as the blood thinners are ceased. Arixtra is out of the bloodstream within a day, IIRC. Not sure about the others. Have people experienced that sort of reaction to the discontinuation of blood thinners?
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Postby mavis » Mon Feb 07, 2011 11:20 am

Cece wrote:LR1234, do you know for sure it's the clexane and not anything else or the effects of the procedure? I cannot remember, after all you went through, if you ended up with more open veins.

I think anyone experiencing improvements from the blood thinners would notice a dramatic drop as soon as the blood thinners are ceased. Arixtra is out of the bloodstream within a day, IIRC. Not sure about the others. Have people experienced that sort of reaction to the discontinuation of blood thinners?


Yes Cece I did. After my clot in the jugular I was put on Lovenox and those days were really great. I felt much better overall and moved better even in my state of limited mobility. After I stopped Lovenox because my INR level is built-up, I am back to my old state of misery again. I continue taking
Coumadin, but it works differently. I am almost looking forward to my next treatment and injections. :D
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Postby David1949 » Mon Feb 07, 2011 2:12 pm

Cece wrote:David, that's one third of Hughes patients, not one third of MS patients. Different patient population.


Cece possibly I misunderstood this. I think it is rather confusing.

Under the subtitle “MS the wrong diagnosis?” It says:
”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. “ To me that sounds like !/3 of patients previously dxed with MS did not have it.


But the first sentence says:

“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’”

And further down it says: “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.” That seems to confirm what you are saying.

So maybe you're right and my geezer brain was not reading it right.
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Postby Cece » Mon Feb 07, 2011 5:22 pm

I'm sorry, David, you are right, although it's rather confusing the way they've put it. I think the 5% is probably the right figure, since that's what I've heard in the past from other sources (5 -10% of MS are misdiagnoses). Hughes is more rare than MS, so even if 1/3rd of pwHughes were originally told they had MS, that would still be a small fraction, I think.

On a different note, from the article frodo linked:
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.

There's a simple blood test.

LR and mavis, keep us posted, I wonder if a hematologist could tell you anything more?
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Postby David1949 » Mon Feb 07, 2011 5:57 pm

They list some of the symptoms of Hughes here http://www.hughes-syndrome.org/symptoms.htm

Many of these sound like MS although some don't.

The description of memory loss sounds like CCSVI.

"Memory loss
--------------------------------------------------------------------------------
When the brain is starved of oxygen (blood supply) it only has a limited number of ways of complaining, and a common symptom of Hughes Syndrome is memory loss. Many patients feel that they are developing Alzheimer’s disease when they can’t remember names of friends and family, forget their shopping lists and get their words and sentences muddled. One of the most dramatic observations in the whole of medicine is the improvement of memory (and the disappearance of the headaches and ‘fog’) which patients observe when blood thinning medicine is started."


Its interesting that two different conditions of blood flow which affect oxygen supply to the brain seem to be associated with MS. It reinforces my belief that Zamboni is at least barking up the right tree, but hasn't quite got the whole picture yet.
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Postby David1949 » Mon Feb 07, 2011 9:15 pm

Does anyone know if Hughes can cause plaques on the brain similar to MS plaques? Also could Hughes cause a positive result for MS in a spinal tap?
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Postby Cece » Mon Feb 07, 2011 10:15 pm

David1949 wrote:"Memory loss
--------------------------------------------------------------------------------
When the brain is starved of oxygen (blood supply) it only has a limited number of ways of complaining, and a common symptom of Hughes Syndrome is memory loss. Many patients feel that they are developing Alzheimer’s disease when they can’t remember names of friends and family, forget their shopping lists and get their words and sentences muddled. One of the most dramatic observations in the whole of medicine is the improvement of memory (and the disappearance of the headaches and ‘fog’) which patients observe when blood thinning medicine is started."

Yes - a great description of cogfog!
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