Aa
Hughes syndrome/Antiphospolipid Syndrome
Hi Everyone.
After speaking to Mrs Aristotle. She has asked me to post this.
I was diagnosed with MS in 1998, after suffering years of neuro problems.
I then went on to live with what i thought was MS for another 12 years, and all my problems i suffered were always put down to MS.
I was then passed on to a new Neuro, who said he didnt think this was MS, so i asked then what could this be?
I was fobbed off royal. He tested me for AIDS, then Porpyria, and i said that all your testing me for is well outside the haystack, He didnt like me telling him ,i had something neurological going on. Even though twelve years earlier i had suffered Transverse Myelitis.
I was rudely patronised, by him, he said my notes looked like someone at 90 years old, and he tried to write me off with Abnormal Illness Behaviour, and Medically Unexplained Syndrome.
I then took poorly this March with Pnuemonia, and was found to be Anticardiolipin Positive, The hospital choose not to tell me, and called me back twelve weeks later to test again, were i was positive again.
The hospital still didnt choose to tell me, and tested me over 4 times over a period off 9 months with all positive blood tests.
I took sight of a note saying APS positive, so i came home and Googled it, and much to my amazement i found Hughes Syndrome.
I then got intouch with the London Lupus Clinic, and made an appointment to see a fantastic man named Professor Graham Hughes, who is a Lupus Specialist.
Hughes syndrome, is Sticky Blood, which can cause all sorts off problems, it can even put patches on MRI scans,
One third of people diagnosed with Hughes syndrome, have been mis-diagnosed with MS.
To test for Hughes syndrome, is two simple bloodtests, which your GP can do.
The tests are Anticardiolipin antibodies, and the other is Lupus anticoagulant.
the criteria is two positive blood tests 12 weeks apart.
It is treated with anticoagulants, to thin the blood,
I hope maybe by putting this on, that maybe you can ask your doctor to test you, because what i lived with for 12 years, which i thought was MS, was actually Hughes Syndrome.
Hughes syndrome can mimic MS to a tee.
In London they say loads of people arent diagnosed with this, illness, and are often Mis-diagnosed along the way.
I hope you are all well, and please just all ask to be tested for Hughes Syndrome. You never know , i was in limboland in 2009, when they said i didnt have MS, but this year i have Hughes, which has took a big portion of my life along the way.
Best wishes
Nicola
After speaking to Mrs Aristotle. She has asked me to post this.
I was diagnosed with MS in 1998, after suffering years of neuro problems.
I then went on to live with what i thought was MS for another 12 years, and all my problems i suffered were always put down to MS.
I was then passed on to a new Neuro, who said he didnt think this was MS, so i asked then what could this be?
I was fobbed off royal. He tested me for AIDS, then Porpyria, and i said that all your testing me for is well outside the haystack, He didnt like me telling him ,i had something neurological going on. Even though twelve years earlier i had suffered Transverse Myelitis.
I was rudely patronised, by him, he said my notes looked like someone at 90 years old, and he tried to write me off with Abnormal Illness Behaviour, and Medically Unexplained Syndrome.
I then took poorly this March with Pnuemonia, and was found to be Anticardiolipin Positive, The hospital choose not to tell me, and called me back twelve weeks later to test again, were i was positive again.
The hospital still didnt choose to tell me, and tested me over 4 times over a period off 9 months with all positive blood tests.
I took sight of a note saying APS positive, so i came home and Googled it, and much to my amazement i found Hughes Syndrome.
I then got intouch with the London Lupus Clinic, and made an appointment to see a fantastic man named Professor Graham Hughes, who is a Lupus Specialist.
Hughes syndrome, is Sticky Blood, which can cause all sorts off problems, it can even put patches on MRI scans,
One third of people diagnosed with Hughes syndrome, have been mis-diagnosed with MS.
To test for Hughes syndrome, is two simple bloodtests, which your GP can do.
The tests are Anticardiolipin antibodies, and the other is Lupus anticoagulant.
the criteria is two positive blood tests 12 weeks apart.
It is treated with anticoagulants, to thin the blood,
I hope maybe by putting this on, that maybe you can ask your doctor to test you, because what i lived with for 12 years, which i thought was MS, was actually Hughes Syndrome.
Hughes syndrome can mimic MS to a tee.
In London they say loads of people arent diagnosed with this, illness, and are often Mis-diagnosed along the way.
I hope you are all well, and please just all ask to be tested for Hughes Syndrome. You never know , i was in limboland in 2009, when they said i didnt have MS, but this year i have Hughes, which has took a big portion of my life along the way.
Best wishes
Nicola
Hi Fred.
I would be interested in the test you are mentioning to do at home.
What does it test for? and were do you get it from?
I think my daughter may have hughes, but she is only 19, and is showing the migraine side, along with banding pain.
I would be interested in testing her at home.
Thank you fred,
I would be interested in the test you are mentioning to do at home.
What does it test for? and were do you get it from?
I think my daughter may have hughes, but she is only 19, and is showing the migraine side, along with banding pain.
I would be interested in testing her at home.
Thank you fred,
There is a simple test you can do at home that can tell you what you have.
Fred
Fred
Lupus anticoagulant. is one of the two bloodtests they do for Hughes Syndrome.
There are two main tests used nowadays- the anticardiolipin(aCL) and lupus anticoagulant-LA(not to be confused with lupus itself- the name is a misnomer). These two tests both look for antiphospolipid antibodies (aPL)- people will either be positive for one or the other, hence the need for two tests.
If you tested positive for the lupus anticoagulant. (LA). then they should have tested you again, in twelve weeks, and not 6 months.
It used to be 6 weeks but doctors at sydney changed this to twelve weeks.
I would strongly say to get tested again, for the Lupu anticoagulant,(LA) .again, and then if you test positive on the second test at the twelve week period, then ask to be referred to the Lupus Unit at St Thomas,s Hospital. London.
They are the real specialists in this field, as Professor Graham Hughes, found this illness in 1983, and it is named after him,
He is now at London Bridge, on a private basis, but his team all work at St Thomas, s , Lupus Centre in London.
I hope this helps you Mrs Aristotle, as this is one illness, if left untreated can cause a lot of problems, and like i say prevention is better than cure.
If you need anymore info, then please get intouch, im so glad you have checked your past records, as you just might be holding the key to your limbo.
Some doctors, dont know a lot about Hughes Syndrome, so they never tell you , you have got it, because they dont know how to treat it.
I would be going to have the bloodtest ASAP, especially with already having a positive result in the past.
Thankyou for taking this post seriously, and im praying, that this just maybe the link to your problems.
Nicola.
There are two main tests used nowadays- the anticardiolipin(aCL) and lupus anticoagulant-LA(not to be confused with lupus itself- the name is a misnomer). These two tests both look for antiphospolipid antibodies (aPL)- people will either be positive for one or the other, hence the need for two tests.
If you tested positive for the lupus anticoagulant. (LA). then they should have tested you again, in twelve weeks, and not 6 months.
It used to be 6 weeks but doctors at sydney changed this to twelve weeks.
I would strongly say to get tested again, for the Lupu anticoagulant,(LA) .again, and then if you test positive on the second test at the twelve week period, then ask to be referred to the Lupus Unit at St Thomas,s Hospital. London.
They are the real specialists in this field, as Professor Graham Hughes, found this illness in 1983, and it is named after him,
He is now at London Bridge, on a private basis, but his team all work at St Thomas, s , Lupus Centre in London.
I hope this helps you Mrs Aristotle, as this is one illness, if left untreated can cause a lot of problems, and like i say prevention is better than cure.
If you need anymore info, then please get intouch, im so glad you have checked your past records, as you just might be holding the key to your limbo.
Some doctors, dont know a lot about Hughes Syndrome, so they never tell you , you have got it, because they dont know how to treat it.
I would be going to have the bloodtest ASAP, especially with already having a positive result in the past.
Thankyou for taking this post seriously, and im praying, that this just maybe the link to your problems.
Nicola.
hi maria,
okay, so what does this mean??
answers??
wow!??
xoxo
binx
okay, so what does this mean??
answers??
wow!??
xoxo
binx
Oh also I have found out they diagnosed Viral lymphadernopathy (1982).
Oh and what is one of the things that can have this attached :
Autoimmune etiology: systemic lupus erythematosus, rheumatoid arthritis all giving a generalized lymphadenopathy.[4
Oh and what is one of the things that can have this attached :
Autoimmune etiology: systemic lupus erythematosus, rheumatoid arthritis all giving a generalized lymphadenopathy.[4
Hi just out of interest well I went back through my notes.
My lupus anticoagulant was POSITIVE.
Then I found a letter to my doctor.
I thought that she ought to start aspirin 75mg once daily given that has has had positive lupus inhibitors detected in her blood..............
BUT nothing I was never told this by my GP. This test was done in 2006 by the way. The repeat after 6 months was negative though so the idea had Lupus was dismissed but you have me thinking now.............
My lupus anticoagulant was POSITIVE.
Then I found a letter to my doctor.
I thought that she ought to start aspirin 75mg once daily given that has has had positive lupus inhibitors detected in her blood..............
BUT nothing I was never told this by my GP. This test was done in 2006 by the way. The repeat after 6 months was negative though so the idea had Lupus was dismissed but you have me thinking now.............
Thankyou for taking note to my post.
I just thought if i could save one person from going through what i have had to go through, then this post has helped.
The answer to your question is yes i have been left with some damage what is now irrepairable. I have bladder problems, and am on the verge of self cathertirisation, and i also have swallowing issues in the pharynx and larynx, which are neuromuscular. along with neuropathy due to demyelination.
I would like to point out the brain fog has been lifted with medication, along with balance and co-ordination symptoms. etc.
But Hughes is auto-immune, so you have relapses, along the way, when everything goes wrong.
I would like to point out though, you can have the antibodies, and then they can quieten down, and then come back with an avengiance. So just because you have been tested and are negative, they can come back.
So testing at regular intervals is neccessary.
A good tip i can tell you though is took look on the legs and arms for what is Livedo Reticularis, which in our terms is corned beef skin. This is a good marker for Hughes syndrome.
It is usually found over the knees, and can go up the legs, or on the wrists, and can go up the arms.
I have it and didnt know what it was, until the doctor said i had prominent Livedo reticularis, and it is associated with Hughes syndrome.
If i can be off anymore help please ask.
The sad part of all this is when you get fobbed off that much, because we are suffering,and are poorly, we tend to throw the towel in, because it is to much trouble to fight.
But we are the sole person in charge off our bodies, so we have to fight, never give up.
I have found if there is a consultant i dont like, then give him up, and look for a better one, thats why my hospital file looked like someone at 90 years old.
Im sure the consultants dont tell us the real diagnosis, due to what it will cost to treat.
Our NHS system as gone to the dogs.
Sorry to rant on, but my views are not highly , on the way people get labelled, and treated. We just get took for a joke.
Have a great weekend ladies, and gentlemen
Nicola
I just thought if i could save one person from going through what i have had to go through, then this post has helped.
The answer to your question is yes i have been left with some damage what is now irrepairable. I have bladder problems, and am on the verge of self cathertirisation, and i also have swallowing issues in the pharynx and larynx, which are neuromuscular. along with neuropathy due to demyelination.
I would like to point out the brain fog has been lifted with medication, along with balance and co-ordination symptoms. etc.
But Hughes is auto-immune, so you have relapses, along the way, when everything goes wrong.
I would like to point out though, you can have the antibodies, and then they can quieten down, and then come back with an avengiance. So just because you have been tested and are negative, they can come back.
So testing at regular intervals is neccessary.
A good tip i can tell you though is took look on the legs and arms for what is Livedo Reticularis, which in our terms is corned beef skin. This is a good marker for Hughes syndrome.
It is usually found over the knees, and can go up the legs, or on the wrists, and can go up the arms.
I have it and didnt know what it was, until the doctor said i had prominent Livedo reticularis, and it is associated with Hughes syndrome.
If i can be off anymore help please ask.
The sad part of all this is when you get fobbed off that much, because we are suffering,and are poorly, we tend to throw the towel in, because it is to much trouble to fight.
But we are the sole person in charge off our bodies, so we have to fight, never give up.
I have found if there is a consultant i dont like, then give him up, and look for a better one, thats why my hospital file looked like someone at 90 years old.
Im sure the consultants dont tell us the real diagnosis, due to what it will cost to treat.
Our NHS system as gone to the dogs.
Sorry to rant on, but my views are not highly , on the way people get labelled, and treated. We just get took for a joke.
Have a great weekend ladies, and gentlemen
Nicola
Hi thank you Nicola for positing this.
I am going to see the GP this week and ask if they have tested me. I know my lupus test came back positive but the second one negative but I have no idea if they tested me for Hughes too.
I am going to ask for a hughes and a lyme test.
I was going to ask you the same as Binxy do you still suffer symptoms?
I just dont think particularly like in the UK the doctors have enough time to deal with us.
10 minutes allotted appointment time, and the specialist about 20minutes you just cant get it all out in that time, and they are all rushed as so many people are sick now.
In the UK alone there are 2.1 million people claiming sickness benefits and only 2.5 million unemployed list its a bit scary.
I think they need to make sure everyone suffering similar symptoms should have all these tests as standard.
Thank you again for positing such an informative piece I know how tired you get.,
BIG HUGS. Mariaxxxx
I am going to see the GP this week and ask if they have tested me. I know my lupus test came back positive but the second one negative but I have no idea if they tested me for Hughes too.
I am going to ask for a hughes and a lyme test.
I was going to ask you the same as Binxy do you still suffer symptoms?
I just dont think particularly like in the UK the doctors have enough time to deal with us.
10 minutes allotted appointment time, and the specialist about 20minutes you just cant get it all out in that time, and they are all rushed as so many people are sick now.
In the UK alone there are 2.1 million people claiming sickness benefits and only 2.5 million unemployed list its a bit scary.
I think they need to make sure everyone suffering similar symptoms should have all these tests as standard.
Thank you again for positing such an informative piece I know how tired you get.,
BIG HUGS. Mariaxxxx
dear nicola,
thank you for posting the story of your journey. i have had both the anticardiolipin antibodies & lupus anticoagulant tests run, but they were both normal. hopefully some others haven't had those tests done and will have their stay in limboland end based on the information you provided.
does your treatment now help your symptoms, or has the hughes syndrome caused some of them to become permanent since you went so long without a proper diagnosis?
i hope you have found some relief at this point, and thank you again for your post.
blessings to you,
binx
thank you for posting the story of your journey. i have had both the anticardiolipin antibodies & lupus anticoagulant tests run, but they were both normal. hopefully some others haven't had those tests done and will have their stay in limboland end based on the information you provided.
does your treatment now help your symptoms, or has the hughes syndrome caused some of them to become permanent since you went so long without a proper diagnosis?
i hope you have found some relief at this point, and thank you again for your post.
blessings to you,
binx
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