I know a #of you have APS and or have suffered from terrible DVTs and PEs … How about protine C deficiency ???any stories would be greatly appreciated xo
I’ve never heard of this deficiency before? Is there a special test that needs to be taken for this? I have horrible pain, I’m scheduled in January to have a muscle biopsy of my legs. I do have positive medium-high anticardiolipins, but negative for APS?
Hi Louise:) this is a test a hematologist would order… My ortopidic dr referred me to my hematologist because I developed clots in my shin a week before I was having a mysterious complex cyst removed from behind my knee cap… A week before my first appointment with the hemo I ended up in the ER for the first time with servere chest pain and shortness of breath so I think it was very obvious by the time I saw her something serious was brewing fast! Protein C deficiency makes you prone to bloodclots,miscarriages and strokes ,its either inherited or acquired… At first I was thought to have the inherited form because I’m positive for a specific gean but I’m never the 30% below the normal level that is seen in this form of the disorder. Im always 10-25% below witch is seen more in the aquired form and that’s also why Im not considered to have protein c deficiency"disorder"… Basically it’s just like how I’ve been positive im guessing all of my life (first test was at 13 yrs old) for antiphospholipid antibodies but that doesn’t mean I have APS. There are specific criteria, events that have to have happened in order to be diagnosed as AP “syndrome”… so I clearly have clotting issues including sticky platelets and animia of chronic disease with iron deficiency as of this May … I take plavix daily and can take lovanox very short term in an emergency situation. You shouldn’t worry about possibly having a protine c deficiency because unless you’re having any kind of clotting or are sent to a hematologist that specific disorder wouldn’t be tested for … good luck xo