Lost, Scared, Confused but Optimistic - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Lost, Scared, Confused but Optimistic


Hello everyone, I am new to the site. I have had two near death experiences with pulmonary embolisms. I have tested positive for the lupus anticoagulants. At firs I was terrified because I thought I had lupus. My doctor explained I did not have lupus. What he did not explain nor diagnosed me as having Hughes Syndrome. As I read in this forum it scared me. I am on wafarin for life which I do not like, because I don't like taking medicine. I have also had 2 blood transfusions and I am still not qualified to be classified to be disabled. I find myself unable to work because the slightest exertion has me gasping for air because I am out of breathe. I am out of breathe taking a shower, (ie. slightest exertion). With that being said, where do I find help with my condition in the United States of America. I really don't know what to do, or where to look for help. I have a pulmonologist, that put me on medicine for life, do I need to see a hemeotologist to get the right diagnosis? I would also like to find an alternative medicine doctor. Can someone point me in the right direction?

11 Replies

Hi and welcome.

I agree with what my colleague has asked you.


Daytona, Florida

MaryFAdministrator in reply to scaredbutblessed

This is a great forum, in terms of the information and swapping of who to see and where, hopefully you will end up with the right team. MaryF

Thank You,Mary. It makes it alot easier knowing I'm not alone.

Hi with the APS/ sticky blood Dia. you are welcome here on this site that is full of caring, knowledgeable people that are here for you. You will need a hemo and a Rheumy , these Dr.'s should be aps dr's and there is lists of Dr's on this site OR someone near you here in the states, I am in N.H.and been on this site for almost 8 years{ i think LOL } let us know where in the states you are and our people near you will get in touch .there is also all kinds of literature on the main site you can use for yourself and your Dr's . getting the correct Dia. is the hard part and then getting the correct meds for your problems. we are all different with this disorder so treatment can vary.one shoe doesn't fit all but the lacing can be close i guess`. So welcome and start your journey here .You wil start to feel better as you get treatment . we are all going thru it here . Jet & Casey

Thank you so very much. I am in Daytona, Florida

OOPs didn't see that our Gal Aps not Fab had entered her thoughts , she is amazing

Hi there, whereever you are ........I am in Sweden. WELCOME to our site!

I just want to say that Warfarin has been my lifesaver. I have Lupus anticoagulant like you have also. You should not be afraid of that drug. I remember I also did not like the idea of "ratpoison". How wrong I was.

See to it that you do not get around with too high bloodpressure. I have pulmonary hypertension from HS/APS and I had very high bloodpressure before I was put on Warfarin and we shall not go with high bloodpressure with this illness especially when we have PEs.

You will see that you can have real good help on this site. We have knowledable and very kind members from the whole world but mostly from England and the US.

Best wishes from Kerstin in Stockholm

Thank you so very much for your kind words and support.

Daytona, Florida

I am in Daytona, Florida

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