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Hughes Syndrome APS Forum

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Kiedra profile image
12 Replies

Hello any help on lupus diagnosis

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Kiedra profile image
Kiedra
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MaryF profile image
MaryFAdministrator

How can we help? I notice you have the same short post in Lupus UK? MaryF

Kiedra profile image
Kiedra in reply to MaryF

I went to the E.R three months ago due to sharp chest pain and bad migraines,and they did a ekg which was good also a chest x-ray and cat scan,a few of my levels were low and they told me they needed to repeat the cat scan due to 1cm on right pulmonary artery to rule out or but i checked out the er due to being afraid because I lost my mom 2 years ago due to health issues she was only 60

Kiedra profile image
Kiedra in reply to Kiedra

I'm having shortness of breath sharp chest pain and swollen right under my chin and trouble swallowing

MaryF profile image
MaryFAdministrator in reply to Kiedra

Well, I suggest you get these blood tests done with your doctor: ANA for Lupus and these three below for Hughes Syndrome/APS

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

And also while investigations are going on it is a good idea to check your Thyroid, B12, D and Iron, we also suggest writing your medical history out in bullet points and also family history. Best of luck but please do go and seek further medical advice sooner rather than later.

MaryF

Kiedra profile image
Kiedra in reply to MaryF

Thank you so much

Lure2 profile image
Lure2

Do you know if your mother had Hughes Syndrome (APS)?

I think you should ask them to do a Ecocardiography with doppler on your lung/heart as sharp chest-pain and shortness of breath is s symptom of APS and if you have APS it should be investigated as soon as possible as you may have had PEs. Do you have high bloodpressure?

Best wishes from Kerstin in Stockholm

Kiedra profile image
Kiedra in reply to Lure2

Hello I don't know if my mom had APS but I do know she was on blood thinners permanently,she also was a diabetic took insulin also thyroid high blood pressure and fibromyalgia but when she went to the ER she was told her pancreas liver and kidneys was inflamed they were trying to get her levels down but her kidneys wasn't filtering then she was supposed to get emergency dialysis but couldn't get stable and didn't make it!

Kiedra profile image
Kiedra

Hello at the end of my mom last days they were running test on her and said she had traces of lupus so I've been looking into things and I thought I've been having symptoms but i never heard of APS !

Kiedra profile image
Kiedra in reply to Kiedra

My symptoms have been chest pains shortness of breath coughing of just a little sputum with mild trace of blood on three different occasions and my neck is swollen and hard for me to swallow on some days and my lower back hurts when i wake up in the morning and my neck and shoulders are stiff also in the morning i can't really do my daily activities because of lower back pain and shortness of breath but the er said after my cat scan they seen a spot on my right pulmonary artery!! I'm a little overweight 215 pounds I'm 5'4 38 years old

Lure2 profile image
Lure2

Do the tests that Mary has suggested. Try to do it as soon as possible.

Also find a Doctor who is specialized in autoimmun illnesses like Lupus and Hughes Syndrome. That can be very important as so few Doctors know about APS as it is rare and rather newly recognized (1983) by prof Graham Hughes.

It is now a well known fact that it may run in families (hereditary).

As they say Lupus they can also mean "Lupus Anticoagulant" (one of the three antibodies they test for APS) and not the illness "Lupus" which is another autoimmun illness. If she had Lupus Anticoagulant your mother no doubt had Hughes Syndrome (APS).

Please stay with us here as you have landed on the right place now. APS is our "speciality" as we all have it and some also Lupus and other autoimmun illnesses.

The "key" to this illness is an unticoagulation drug that will thin the blood as we have quite too thick blood that clot.

Kerstin

Kiedra profile image
Kiedra in reply to Lure2

Ok I will Thank you

luisal profile image
luisal

Hi

A wonderful source to check fir symptoms, exams and treatment is Lupus Today. Just google it. All the best.

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