Antiphospholipid Syndrome Support Group
Antiphospholipid syndrome (or antiphospholipid antibody syndrome) is a disorder of coagulation which causes thrombosis in both arteries and veins, as well as recurrent miscarriage. It is due to the autoimmune production of antibodies against cell membrane constituents. A very rare form is the catastrophic antiphospholipid syndrome, in which there is rapid organ...
Hi Everybody:
I was diagnosed yesterday and I am still trying to process all this.
After a visit to the eye Dr where he saw blood in the back of my eye and sent me to a retinal Specialist. The RS diagnosed me with Brach Retinal Vein Occlusion and told me to go see a Hematologist. After blood test and sonograms in my arms and legs blot clots where found in my arms.
I was put in Eliquis. I still have to go see a neurologist because the hematologist wants to see if I have clots in my brain.
This is just a lot for me.
What is your treatment for this? how often do you have to check your blood? are you protect with a blood thinner? DO YOU Have any symptoms from APS?
Thanks
Sra
I was diagnosed yesterday and I am still trying to process all this.
After a visit to the eye Dr where he saw blood in the back of my eye and sent me to a retinal Specialist. The RS diagnosed me with Brach Retinal Vein Occlusion and told me to go see a Hematologist. After blood test and sonograms in my arms and legs blot clots where found in my arms.
I was put in Eliquis. I still have to go see a neurologist because the hematologist wants to see if I have clots in my brain.
This is just a lot for me.
What is your treatment for this? how often do you have to check your blood? are you protect with a blood thinner? DO YOU Have any symptoms from APS?
Thanks
Sra
I was diagnosed with APS in 2004 - Lupus 2006 and confirmed seizue activity in 2008.
I have found the hardest part with these diseases is that many people don't believe you, because they don't understand it AND because you look normal most of the time.
they don't understand the fatigue, depression, weird pains etc. that go along with it.
Before 2004 I was seeing a neurologist because I was not feeling right - after a few visits she put me on PAXIL, antidepressent!!
I went off them after 6 months - gained weight, and YES, now I was depressed!
Long story short, another neurologist looked at me, including an MRI and discovered TSI's mini strokes - then the rest of the diagnosis followed.
Like I said prime example of people not believing you - and a Doctor included!
I am on coumadin (INR 2 - 3) plaquenil, (lupus) and Dilantin (seizures)
It can become depressing sometimes - constantly tired and many other symptoms when it wants to "raise it's ugly face" Never know when a Lupus episode is going to happen.
Good to talk to people whom understand or relate.
take care, lorie
You are right. Is very frustrating when people tell you: oh but you look good so I forget you are sick?????
Question for you. Did you have Lupus tests before your APS diagnose?