Hi, everyone. How many of you have found that, if you have low positive antibodies, you have trouble finding doctors to treat you? I'm running into that. The CCF doctor said my antibodies are too low to be treated. He didn't consider that I have the antibodies, period, along with a history of blood clots (he said that since they weren't unprovoked, they didn't count); I have livedo regicularis; migraines; and so many other symptoms of the syndrome, plus a brother who had three heart attacks before aged 50, another brother who has had several TIA's and has seizures; a son who had seizures and now has severe chest pain with exercise; a cousin with lupus; a dad who died of a heart attack at age 66 while on coumidin. He said my, and my family's history sure supports an autoimmune condition like APS, so he understands why I have the low level of antibodies that I do, but he doesn't believe I have APS and treating for it would be hurtful to me.
What do you all think? I contacted the Foundation, and she thinks this doctor is incorrect, so she called another top APS doctor in the US, and she said she doesn't care how low my antibodies are or why I got blood clots, I have the antibodies, period, and I got blood clots, period, and with my family's history, I need to be treated.
Ugh. Did all of you have such a hard time getting diagnosed? I have a pathologist saying I have this, a top doctor in Maine saying I do, but three docs at CCF saying I don't, but the Foundation president saying I do. I don't know what to think.
I do have my two brothers and son getting tested for it.