What's really going on here?

[Whatsthedeal]

my symptoms are:

Hard to get a deep breath

Purple "veiny" looking legs, purple arms if I get the least bit chilled.

Red face, neck

Hand and feet burn or tingle

Itchy skin, especially my lower legs

Recent pulmonary embolism, 5 clots in the lung

anemia

Elevated antiphospholipid

Very high PT

very high PTT

All Of M dRVTT very high

Protein S activity very low

I'm waiting on a diagnosis. Does any of this sound familiar?

[hotinAZ]

Hello, I'm not a doctor. But have they mentioned anti-phospholipid syndrome? Keep us posted. I'm going thru a lot of testing myself right now. Good luck, hope you feel better. Do you have a positive ANA?

[Watson1017 in reply to hotinAZ]

I was diagnosed with PBC last December and just last week diagnosed with Anti phospholipid Syndrome. Interesting that you mentioned this. Getting a lip biopsy tomorrow to try to confirm Sjögren. I currently now have 4 specialists and no one seems to put my pieces of my health together.

[hotinAZ in reply to Watson1017]

I'm sorry you are going thru all this. I've been going thru the same thing. Having more blood work tomorrow. I see a Naturopath so he really works with me and orders whatever tests I want. All you really need is a Rheumatologist to order all the different antibody tests. They know exactly what to order. Once he sees those he can refer you to the specific specialists. With PBC, you should be seeing a hepatologist (liver specialist) if you have access to one. Gastroenterologists don't know as much as a hepatologist. Somebody needs to order an ANA with reflex & ANA cascade. That will tell them specifically what's going on.