I have suffered from migraines from the age of 9.I have had 10 miscarriages, 4 full term pregnancies. (Births). My 3rd I had a placental abruption 11 days before due date. Luckily it was a hospital check up day and it was caught. I survived and he did. My 4th I had terrible headaches and went for tests. They put in a cannula and as she took it out she pulled out a clot the length of a middle finger! She said oh you might have sticky blood, I’ll tell the Dr. I heard nothing more. 18 years later I’m now very ill. I have a strange ‘corn beef’ colour on my feet and just under my knees. I have constant headaches, memory loss, hearing loss and I suffer with joint pain and dizziness. I’ve been waiting for genetic testing for 4 years. My Drs think it’s all in my head. I’m almost bed bound as I’m that ill. I can’t get ANYONE to take me seriously. They think it’s fibromyalgia and that’s it. I’ve suffered for 34 years. On my right shin I get bruising and a burning sensation that’s really painful. I’m now having liver problems and had a scan this week. How can I make them take this seriously?
Lilibet Black thanks for sharing. We can't give medical advice but a Haematologist / rheumatologist should help. The list of symptoms certainly raise the possibility of APS
Lilibet Black, many patients with APS are also diagnosed with fibromyalgia or CFS. There are APS foundations around the world that can guide you to the right medical professionals
It’s getting them to listen. In the 4 years of being seriously ill and 5 hospital stays no one has EVER took a full history of any of my symptoms. If I try to tell them I’m told they’re of no use. I can’t get any further than my GP.
Lilibet Black which country are you based in? A specialist opinion would be appropriate considering the symptoms you have outlined. Ps - not medical advice
According to research criteria - Antiphospholipid antibody syndrome (APS) is present if at least one of the clinical criteria and one of the laboratory criteria are met. But there are seronegative cases of APS. Hence in clinical practice it is important to look at clinical symptoms and treat the person not the blood test.
I have it, 12 yers old when the. Migrens started , in 36 yers when i lost 6 pregnens, wi finds this sickness, i losses til 42 anather 6 pregnancy.We tray with a Fragmin 18000,I loss oll of my pregnancy.
Professor Hughes diagnosed me 16 years ago with Hughes syndrome and sjogrens syndrome. I never had a positive test but was told that I had a positive clinical diagnosis. I returned each year to the hospital. I had my yearly appointment about two years ago and saw a different doctor,he took me off the medication and said that as I have not had a positive after this time, I did not need to come back. I have not been well since and the sjogrens syndrome is worse,so who is right!?
In medicine they say treat the person, not the blood test; There is also an entity called seronegative antiphospholipid syndrome where blood tests are negative. I've personally had such a patient. You should discuss it with your doctor.
Hi sir, Please reply me im.from sri lanka.the doctors are suspecting that my wife has APS and they asked to do anticadiolipin and beta 2 glycoprotien test so we just provided the blood samples to the hospital.what is the refference range for these test results ? My wife had 2 miscarriages and she was treated in the icu for almost 1 month after the second miscarriage (5 months- did a surgery to get twin babies) due to high blood pressure ) Is this causing any drugs (medicines) and being in the bed for a long time ?
The lab will have their own reference range: it differs. It’s difficult to answer any specific questions - it’s best that a haematologist and or rheumatologist is involved who can specifically answer these questions. Wish your family well
This question can't be answered on this forum. This depends on several factors - clinical severity, symptoms etc. If present a rheumatologist / Haematologist can provide specific advice.
I have aps and had 7 losses and 1 successful pregnancy after with lovonox and baby aspirin prior to conceiving and thru out and until 6 weeks postpartum
I have SLE and AP but never had a blood clot. I also have Vonwillenbrands. I was wondering if the VW may help in the prevention of clots.
It’s plausible. A haematologist would be the most appropriate person to answer that.
I have suffered from migraines from the age of 9.I have had 10 miscarriages, 4 full term pregnancies. (Births). My 3rd I had a placental abruption 11 days before due date. Luckily it was a hospital check up day and it was caught. I survived and he did. My 4th I had terrible headaches and went for tests. They put in a cannula and as she took it out she pulled out a clot the length of a middle finger! She said oh you might have sticky blood, I’ll tell the Dr. I heard nothing more. 18 years later I’m now very ill. I have a strange ‘corn beef’ colour on my feet and just under my knees. I have constant headaches, memory loss, hearing loss and I suffer with joint pain and dizziness. I’ve been waiting for genetic testing for 4 years. My Drs think it’s all in my head. I’m almost bed bound as I’m that ill. I can’t get ANYONE to take me seriously. They think it’s fibromyalgia and that’s it. I’ve suffered for 34 years. On my right shin I get bruising and a burning sensation that’s really painful. I’m now having liver problems and had a scan this week. How can I make them take this seriously?
Lilibet Black thanks for sharing. We can't give medical advice but a Haematologist / rheumatologist should help. The list of symptoms certainly raise the possibility of APS
Lilibet Black, many patients with APS are also diagnosed with fibromyalgia or CFS. There are APS foundations around the world that can guide you to the right medical professionals
Lilibet Black here are the neuropsychiatric manifestations - ruclips.net/video/RSCLMu45F30/видео.html
It’s getting them to listen. In the 4 years of being seriously ill and 5 hospital stays no one has EVER took a full history of any of my symptoms. If I try to tell them I’m told they’re of no use. I can’t get any further than my GP.
Lilibet Black which country are you based in? A specialist opinion would be appropriate considering the symptoms you have outlined. Ps - not medical advice
Haha better than Osmosis. Of course you are the one who discovered the syndrome
Does that means that you need both test to be positive or if the one is you have one you have it?
According to research criteria - Antiphospholipid antibody syndrome (APS) is present if at least one of the clinical criteria and one of the laboratory criteria are met. But there are seronegative cases of APS. Hence in clinical practice it is important to look at clinical symptoms and treat the person not the blood test.
Ty❤❤❤
I have it, 12 yers old when the. Migrens started , in 36 yers when i lost 6 pregnens, wi finds this sickness, i losses til 42 anather 6 pregnancy.We tray with a Fragmin 18000,I loss oll of my pregnancy.
So sorry to hear . Thank you for sharing your story .
Professor Hughes diagnosed me 16 years ago with Hughes syndrome and sjogrens syndrome. I never had a positive test but was told that I had a positive clinical diagnosis. I returned each year to the hospital. I had my yearly appointment about two years ago and saw a different doctor,he took me off the medication and said that as I have not had a positive after this time, I did not need to come back. I have not been well since and the sjogrens syndrome is worse,so who is right!?
In medicine they say treat the person, not the blood test; There is also an entity called seronegative antiphospholipid syndrome where blood tests are negative. I've personally had such a patient. You should discuss it with your doctor.
@phsycSceneHub thanks for the information I will show this to the doctor.
Hi sir,
Please reply me im.from sri lanka.the doctors are suspecting that my wife has APS and they asked to do anticadiolipin and beta 2 glycoprotien test so we just provided the blood samples to the hospital.what is the refference range for these test results ?
My wife had 2 miscarriages and she was treated in the icu for almost 1 month after the second miscarriage (5 months- did a surgery to get twin babies) due to high blood pressure )
Is this causing any drugs (medicines) and being in the bed for a long time ?
The lab will have their own reference range: it differs. It’s difficult to answer any specific questions - it’s best that a haematologist and or rheumatologist is involved who can specifically answer these questions. Wish your family well
@@PsychiatrySimplified thank you for your respose ❤️
Is this any related to chillblains
Chilblains can be part of Raynaud's, which is linked to APS
Do u need any medication after pregnancy if u have hughes syndrome? I mean do u have to b on lyf time medicine after knowin ur aps positive ?
This question can't be answered on this forum. This depends on several factors - clinical severity, symptoms etc. If present a rheumatologist / Haematologist can provide specific advice.
I have aps and had 7 losses and 1 successful pregnancy after with lovonox and baby aspirin prior to conceiving and thru out and until 6 weeks postpartum
Thank you so much for sharing your personal experience. So sorry for your losses ; glad treatment made a very big difference to your life.
I had 3 losses of pregnancies..
Today I have received APS report..cardiolipin is positive .
Is it possible to get pregnant..?
@@chhandgruhinicha7127 yes