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Old 03-12-2009, 11:06 AM   #1
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amelaine HB User
hughes syndrome

can anyone tell me anything about hughes syndrome or sticky blood

 
Old 03-12-2009, 06:02 PM   #2
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Re: hughes syndrome

Amelaine, hi. There are some "sticky posts" ( = permanent info posts) at the top of the thread list. The one about "Antiphospholipid Syndrome/Hughes Syndrome" is an overview that includes symptoms, diagnostic criteria, etc.

The dr. who did the breakthru work on "sticky blood" is Dr. Graham Hughes. He's London-based (or was; maybe he's retired?), is world-reknowned, and has written multiple books both on lupus & on sticky blood. So you could probably find his books in your library or a bookstore, if you want more detailed info.

Hope this helps some. Post more when the mood strikes, OK? Sending best wishes, Vee

 
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Old 03-14-2009, 07:20 AM   #3
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Re: hughes syndrome

Hello,

I have aps/hughes/sticky blood. What do you need to know specifically ?

Hope I can help. Take care.

goldenwings
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Old 03-17-2009, 02:58 AM   #4
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Re: hughes syndrome

hi
thank you for replying I have ms but i also had a mystery blood disorder when i was 4yrs old, I also have a history of miscarriage,stillbirth and migraine. The blood tests i have had do not reveal anything out of the ordinary and my doctor is not willing to pursue hughes syndrome. I am now of course wondering if i have ms or not?
regards
carol

 
Old 03-17-2009, 08:05 AM   #5
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Re: hughes syndrome

Hiya amelaine,

As you obviously know both ms and lupus are auto immune disorders and are often mistaken for each other. You do need a definitive diagnosis for this and your doctor should be more on the ball with the info.

The things you speak of i.e. miscarriage, stillbirth and migraine are but a few of the things that 'can' occur with hughes/sticky blood/aps. I think it strange for your doctor not to want to look into this further when you have 'possible' signs of the disorder.

Is he/she in fact a rheumatologist? A GP is not the best person to look into this, they should refer you on to a qualified doctor who can do appropriate testing and put your mind at rest one way or the other.

I would really push for this to be done, especially if you are of the age when you may want to have children. Of course it isn't only having children that is affected, it can cause other problems.

Please push and push and ask questions, be firm - it is after all your right to find and get the best possible treatment you can.

Take care, goldenwings
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Last edited by goldenwings; 03-17-2009 at 08:07 AM.

 
Old 03-17-2009, 11:01 AM   #6
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Re: hughes syndrome

Amelaine, Golden gave you the best advice, find a doc who will help you and do the right testing. I have APS, but when I was having miscarriages and migraines and blood clots and fatigue, APS had not been discovered. Please do get tested, even without the knowledge that APS existed I have two beautiful children and now two beautiful grandchildren. I am now on aspirin therapy to help prevent any serious problem with the blood clots. So many things that happened in my life were explained when I found out about APS. Please find a rheumatologist and get tested.

Glojer

 
Old 04-15-2009, 07:16 PM   #7
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Re: hughes syndrome

Golden Wings...I too have sticky blood. I see a rheumatologist for it. What kind of dr. would you recommend to follow this? Also, I feel extremely tired sometimes to the point of exhaustion and i am only 46!! Do you ever feel this way? Thanks for reading.

 
Old 04-16-2009, 04:17 AM   #8
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Smile Re: hughes syndrome

Hiya luvcows,

the thing is the type of doctor you should see is dependent on the symptoms you are having. Some patients do have to see quite a few different specialists for specific problems caused by APS. For instance if you had blood clots - which are not a given, only a statement for this post - a haematologist should be involved - usally to keep on eye on the anticoagulant therapy (blood thinner).

For patients with recurrent miscarriages, a high-risk obstetrician should be consulted. Of course, all patients would benefit from having a single physician identified as their primary care provider and they should help coordinate/look after all of their healthcare needs. This is a normal thing to happen, but if there are any specific problems as mentioned then the appropriate doctor should be brought in.

Hope this helps.

goldenwings
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Last edited by goldenwings; 04-22-2009 at 06:02 PM.

 
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