Antiphospholipid Syndrome Support Group

I am new to APS, about a month now, trying to get blood levels acceptable.

have great emotional battles with myself because I feel so all alone, husband is in his own world unless I am in the hospital, than he is concerned.

Hi there. The title really grabbed my attention. Having strokes and APS is the hardest thing I have ever been through. I feel alone as well and very depressed. I have a great intentions but I cannot seem to get motivated. It is scary to think that this disease is a life threatening illness. I do know it is treatable with limitations. I hope that we can all support each other here. Maybe you husband thinks that just because you are out of the hospital that everything is fine and that is not the case. You are doing the right thing by finding a support group to talk to others who do understand. [http://melaniechadwell.blogspot.com] Please join my blog and share your news with me.

Post edited by: MelanieC, at: 05/31/2010 10:31 AM

Post edited by: MelanieC, at: 05/31/2010 10:31 AM

Sorry to hear about your strokes. I had extensive labwork done recently due to ongoing lupus symptoms. Something is going on with my blood and arteries. The arteries are inflamed and my antiphospholipid test was inconclusive but with a score of 1 point before it would be considered positive. I have been put off to other doctors because the reumatologist doesn't know exactly what is wrong with me. Cancer has been ruled out, thank god but I was disappointed when the blood specialist refused to prescribe me a blood thinner and even stated "well you haven't had any blood clots yet"! I now have red bruise-like marks on my legs which feel like bruises and have been there for more than 4 weeks! I would take aspirin but I have another rare condition, pseudotumor cerebri which causes excess spinal fluid to build up surrounding my brain and I cannot mix aspirin with the med I take for that. I am alredy on plaquinel for lupus and norvasc to open up my arteries.I am getting sick of being pushed off to dr after dr for diagnosis and treatment. Did you have problems getting the proper diagnosis and treatment for your APS?