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Hughes Syndrome APS Forum

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JenInCali profile image
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Hi, just got diagnosed a couple weeks ago after 2 incidences of pulmonary embolism and positive lupus anticoagulant. I also have fibromyalgia and HLA B27 which makes ankylosing spondylitis likely when coupled with my symptoms. Got to go get x-rays to confirm AS. Getting a diagnosis makes so many things I have experienced with my health fall in to place. At least I won't be a whacked-out hypochondriac anymore.

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JenInCali
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MaryF profile image
MaryFAdministrator

Hi there and welcome, thank goodness things are being picked up, As your consultant or GP is clearly into testing things currently, make sure they look at your Vitamin D, B12 and Iron, plus also your Thyroid, Often Fibro is a Thyroid problem coupled with Sjogrens Disease which is not unusual for us lot. The TSH test if often the only test done for the Thyroid and it has a pretty poor reputation for being accurate. MaryF

Lure2 profile image
Lure2

Hi JeninCali,

I have positive Lupus Anticoagulant and Pulmonary Hypertension.

Important that you are properly anticoagulated and keep your bloodpressure down.

Hope you have a Specialist who really understands your APS and your symptoms.

Best wishes from Kerstin in Stockholm

important to access the BEST specialists possible..where are you located...ie in the East The Hospital for Special Surgery in New York City has a Rheumatology Department that does research and specializes o APS and other Autoimmune Disorders AND they have a website with links to other teaching hospitals and medical centers in the US

hss.edu/rheumatology.asp

mayoclinic.org/departments-...

best of luck....if you need further info on medical centers please let me know

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