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

Hughes Syndrome APS Forum

10,414 members10,623 posts

Lost, Scared, Confused but Optimistic

scaredbutblessed profile image

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?

Written by
scaredbutblessed profile image
scaredbutblessed
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Manofmendip profile image
Manofmendip

Hi and welcome.

I agree with what my colleague has asked you.

Dave

scaredbutblessed profile image
scaredbutblessed in reply toManofmendip

Daytona, Florida

MaryF profile image
MaryFAdministrator in reply toscaredbutblessed

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

scaredbutblessed profile image
scaredbutblessed in reply toMaryF

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

jetjetjet profile image
jetjetjet

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

scaredbutblessed profile image
scaredbutblessed in reply tojetjetjet

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

jetjetjet profile image
jetjetjet

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

Lure2 profile image
Lure2

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

scaredbutblessed profile image
scaredbutblessed

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

scaredbutblessed profile image
scaredbutblessed

Daytona, Florida

scaredbutblessed profile image
scaredbutblessed

I am in Daytona, Florida

Not what you're looking for?

You may also like...

Lupus Anticoagulant Pregnancy

Hello, i am new to this group and I have just been diagnosed with lupus anticoagulant after having...
Nallita profile image

Confused Newbie

Hello All - I am from the USA and just came upon this forum and am looking for some...
3Snyders profile image

Testing positive and really scared

Hey everyone I am a 42 year old male in NYC with no history of strokes, Lupus or any autoimmune...
BobbyPeru profile image

Possible SLE now but confused

Hi all, so, I've seen Dr Karim twice now. the first lot of blood tests were sent to me (see...
phoenix77 profile image

Even more confused than ever

I had posted the other day about some concerns I was having and wondered if it had to do with the...
becca10 profile image

Moderation team

See all
lupus-support1 profile image
lupus-support1Administrator
MaryF profile image
MaryFAdministrator
HollyHeski profile image
HollyHeskiAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.