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Forum: Autoimmune Diseases and Disorders

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  #1  
November 12th, 2009, 02:49 PM
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My name is Lorraine. I posted in here a while back because I was diagnosed in 1998 that I have Antiphospholipid syndrome. I found out I had it after I had a full term stillborn. I posted this on a forum especially for this disorder to find answers. I just found out the my cousin was sick recently with a clot in his lung and chest pains and they tested him and they found out he has the same blood clotting disorder I have Antiphospholipid Syndrome APS. He has a bad case of it. He is on Coumidin(SP). He has had headaches and the chest pains. Also he has had anxiety from this that he has had some weight loss and has been put on meds for that too. He is afraid to take care of his own daughter who is the same age as Maddie. He is also a cop in New York City. My aunt made my other 2 cousins get tested after 1 complained of migraines. Well they all have been diagnosed. My brother is going to get tested now being 4 out of the 5 cousins ( 2 girls including me and 3 boys including my brother) have APS. My aunt is going to get tested and if she is diagnosed then my father will go get tested. We are trying to figure out who had the gene my grandmother or grandfather. They are both deceased now so it makes it a little tougher. Now the question I have is 3 of the cousins have children me, and cousin and my brother. I have 3 kids (ages 10,7,and 2), my cousin has 1 (age 2) and my brother has 2 (ages 6 and 3). Should we have them tested also? If not then when should we have them tested? I was told that not to have them tested right now but wait until they show signs of the disorder because in the future they may not be able to get health insurance or life insurance with a pre existing condition. I am going to ask the pediatrician about getting the kids tested when I go on Tuesday when I take Rayna for her 10 year checkup. Now I am only am borderline and don't need medication. It only affects me being pregnant. I am going to ask my OBGYN when I go in December


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  #2  
February 23rd, 2010, 06:06 PM
Celena's Avatar Proud JM hostess
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You know I would have them tested because the sooner you know something the better, you can prevent the complications that are associated with APS/APLS. I think that it couldn't hurt and even if it turns up negative now, I would request periodic testing thru their childhood / teen years. Certainly wouldn't hurt!

I have to say also that I am SO SORRY to hear about your stillborn loss it sounds cliche and please don't take this the wrong way (I mean it with best intentions) because no mother should ever have to go thru a loss, but this little one saved your life by getting you a diagnosis for APS! (and also some of your family members as well)

What is your treatment plan if you don't mind me asking? Is it as simple as a baby asprin or a little more complex? (hope I'm not prying too much)
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  #3  
February 24th, 2010, 06:02 PM
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Quote:
Originally Posted by Celena View Post
You know I would have them tested because the sooner you know something the better, you can prevent the complications that are associated with APS/APLS. I think that it couldn't hurt and even if it turns up negative now, I would request periodic testing thru their childhood / teen years. Certainly wouldn't hurt!

I have to say also that I am SO SORRY to hear about your stillborn loss it sounds cliche and please don't take this the wrong way (I mean it with best intentions) because no mother should ever have to go thru a loss, but this little one saved your life by getting you a diagnosis for APS! (and also some of your family members as well)

What is your treatment plan if you don't mind me asking? Is it as simple as a baby asprin or a little more complex? (hope I'm not prying too much)
I was told that there was no reason to test the kids right now if they are not showing symptoms.
My APS only affects me when I am pregnant. So I don't have a treatment. I went to the doctor in December and explained to him everything I explained in my previous post. I was also complaining of a headache and fatigue. I had blood tests done to check for everything. I am on the low end boarder line anemic (explains fatigue) so I am on iron pill. He said if I wanted to start a baby aspirin to control my APS. I don't need anything else. Just to keep an eye on any other symptoms.
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  #4  
February 24th, 2010, 08:22 PM
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That's good to hear, glad your Dr is optimistic and your symptoms aren't chronic daily pains to deal with. I had read about it before replying to you so it wasn't in ignorance that I replied if that makes sense?

Does your APS accompany anything else? like lupus or arthritis's?
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  #5  
February 25th, 2010, 08:54 AM
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[quote=Celena;19199870]That's good to hear, glad your Dr is optimistic and your symptoms aren't chronic daily pains to deal with. I had read about it before replying to you so it wasn't in ignorance that I replied if that makes sense?

Does your APS accompany anything else? like lupus or arthritis's?[/quote

It makes sense. No nothing really accompany my APS. Just the headaches
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  #6  
March 15th, 2010, 07:04 PM
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I went to the RE today and she tested for this along with a bazillion other things...

I'm glad that you shared your story here because it is very helpful to bring awareness and let others know that there are ladies out there with this!
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