Antiphospholipid Syndrome Support Group

Hi Donna,
DONT waste your time with a hematologist. They are clueless about the auto-immune effects APS can have on a persons body. I 100% have APS and 2 hematologists LAUGHED at my diagnosis telling me I DIDNT FIT the criteria either because I hadnt had a CLOT. COmpletely FALSE information. Period. You dont have to clot to have APS and it can make you extrememly sick. I am positive you have APS which is causing you all your problems. Your Beta 2 would not be elevated if you didnt have it. This is the gold standard test for APS. I left the offices of the hematologists crying from being made to feel like such a wacko idiot. Meanwhile, I have been confirmed to have primary APS by 2 rheumies and my perinatologist plus all my blood work.

My suggestion for you is to go to the APS foundation of America and look for a rheumy in your area who specializes in APS. It doesnt sound like your rheumy is knowlegable about APS and its treatment. When you see her, BEG her for a trial of Plaquenil. If it helps with your symptoms then she will have the confirmation that APS is your diagnosis and causing you your problems. Meanwhile take a baby aspirin a day........I can tell u first hand that the proper APS meds can give you your life back. They have for me and I was so sick I wanted to die. You can also request that she test you for the MTHFR gene (I have this as well) which can be common to have with APS and also causes strokes, heart attacks, clots, etc. That may help confirm APS...Its so frustranting when dr.s who are suppose to help you, refuse to.....Some would rather wait until you have a clot to instead of PREVENTING one. Ridiculous.

It is possible that you had a TIA which arent seen in MRI/MRA's. They are mini strokes but cause no damadge (usually). Common in some APS people.
Hang in there and email me if you need any help
melissa

Just wanted to dispute your advice on staying away from Hemotologists. My Hemo is the one who finally diagnosed me after a year and a half of vague symptoms. The Rheumy I sought out only confirmed my diagnosis but then stated he would take me off of Coumadin if my antibody levels dropped. My Hemo may not get all of the autoimmune stuff, but she has saved my life while the Rheumy it seems is trying to ruin it. No doctor is perfect, there are good and bad ones out there, no matter what their speciality.

I guess everyone has different experiences because everyone I have spoken to with APS who hasnt clotted was told they could not possibly have APS without clotting. The 3 hematologists I saw also told me I did not have APS and I 100% do. The thing about hematologists is that they usually only prescribe blood thinners and are not knowlegable enough about the auto-immune factor of APS which is what alot of people with APS symptoms suffer from and need Immuno suppressant type drugs for treatment for the symptoms and to stop your body from producing the antibodies that produce the clotting and symptoms in the first place. I actually agree with your rheumy...IF you have not clotted before. Plaquenil is the main treatment for APS which thins the blood and helps your body stop producing the phospholipid antibodies. You would not need coumadin if you have not clotted (which does nothing for the immune system) because the plaquenil would take its place and actually be more beneficial to prevent and stabalize your immune system. Because of my knowlege and experience with APS and hematologist, I stand behind my statement. MOST hematologists do not know how to control the immune system part of APS. The immune system is the key in preventing APS clotting and symptoms. Coumadin just doesnt do it on its own.