Hi everyone. I'm 64 and just diagnosed with APS. I am seeing a specialist in hematology who suspects I've had active APS for many years but misdiagnosed until 2 PEs 30 days apart starting on July 4th this year with second one August 3rd. Both lungs have clots but my right lung is the worse with all 3 lobes filled with small clots where as left lung only has clots in lower lobe.
I take Coumadin everyday and have a INR target range of 3.5 to 4.5. My husband and I like to take long rode trips by car. My hematologist gave me syringes filled with 100 of lavonox to take on days we will travel more than 3 hours at a time. These injections really burn for a couple of minutes afterwards but nothing I can't stand.
My hematologist made the diagnosis of APS because I have multiple autoimmune diseases, I miscarried my first child and gave birth prematurely to my 2 children due to eclampsia. I have Hoshimotos thyroiditis and rheumatoid arthritis.
I have ankolosing spondilitis and had terrible pain radiating into my legs. I had weakness in my legs and was using a walker for the last 3 years. My mind was confused and I though I was realy losing it. Everything symptom I had they blamed on my back!
Then I had my 1st PE. After being treated for 3 days with heparin and Coumadin the pain in my legs went away. The weakness also started to improve and my mind became clear and sharp again!
I was having TIAs and the muscles in my legs were suffering from vascular congestion which was the real cause of my leg pain. So I'm feeling like I did 10 years ago! No more walker for me and I'm back to remembering everything.
My hematologist has his PhD and did extensive research on autoimmune clotting disorders before he became a Doctor of Medicine. I feel he is the best in hematology and hiss office is in Panama City, FL.
I feel he has educated me and my husband very well in the treatment of this autoimune clotting disorder.