New: Hi, just got diagnosed a couple... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,397 members10,601 posts

New

JenInCali profile image
3 Replies

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.

Written by
JenInCali profile image
JenInCali
To view profiles and participate in discussions please or .
Read more about...
3 Replies
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

Not what you're looking for?

You may also like...

Hydroxychloroquinine any alternatives?

I have had to stop my hydroxychloroquinine due to the drastic increase in my psoriasis on my face....

New yeas eve, isn,t it ? Resolutions

Whats yours? I have been thinking of what mine could be I have now decided. I was bought me a...

New diagnostic criteria?

Hi,  I wonder if anyone can help please?  I was diagnosed with APS, approx 9 years back, on signs...

I'm new to this :/

Hello everyone, this is all new to me but I need someone who understands. I feel so alone. I am...

NHS blunder

I have finally got the news that I wanted to here. The NHS have admitted that they caused me to...