I was diagnosed with Lupus anticoagulant about 4 years ago because I had a few miscarriages, I was put on injections of heparin when I was pregnant, I have never been given much information on it. I was born 3 months early with a heart condition, which I had an operation on at the age of 4 to fix. I have eye surgery to fix lazy eyes, got asthma, had poloycistic ovaries, told I couldn’t have kids after having surgery on them as I collapsed(I have 4).I got Henoch Schonline Purpura at the age of 20, was really really ill. I also have a hitas hernia, had costocondritis loads of times for years, no one ever mentioned lupus, also when I had hsp my joints were agony and no one mentioned much about it. During my pregnancies I get well looked after, but after that I feel I don’t understand any of it. I had quite a few blood clots on the brain which dispersed itself during my pregnancy, I am on warfarin, for my lupus, antibiotics for my hsp, inhalers for my asthma, lansoprasol for my hernia, nifedapine for my blood pressure. Just now my knees are badly swollen and very very painfull, my hands get really sore, my breast bone is really badly swollen and very very sore aswell, I get mouth ulcers constantly, loads at one time, no one has ever connected any of these things with anything, I feel at times I am going MAD…… I don’t really know what I am trying to say, I just want to know what is wrong…. thanks
hi creelladevil, welcome to our wonderful circle of special friendships. This is the place where you can find answers to your questions, and you will always find someone ready to be your friend..............WOW. you have been through so much. How old are your children? I know they brings lots of laughter to your home. You suffer from so many things that i don't know anything about, and i am so sorry that you face all of these problems. I can offer some help on a couple of things. First of, your mouth sores....many of us suffer with these. Plaquenil (which is most often prescribed for lupus) reduces these sores, and so does folic acid. I take 25 mg a day, but many people take less. I also have a medicated mouth wash that i use if the sores get really bad...........if you will look in Lauri's Lounge, and check out the thread about ASP, you will find others talking about lupus anticoagulant.............Swollen and sore knees, ankles, wrists and hips are very common among us lupies. With lupus being such an individual illness, there are different ways that we each get relief from these symptoms............Again, welcome, please join in on some of the threads, and become a member of our family.
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Hi Cruelladevil. I LOVE your name! Welcome to WHL!
I think your frustration is completely understandable. A lot of us on here have not been diagnosed with Lupus and have doctors that have never made the connection that we can see so clearly. Personally, I have Raynauds, Psoriasis, Diabetes (Type 2 but 100% under control), joint swelling and pain, sensativities to light, random rashes, and the lovely mylar rash as my most prominent symptoms. I have been sick on and off (mostly off thank God) for 15 years. It's maddening to think that all that time has passed and we still don't know why we get sick but take heart in the fact that we are not going mad.
I think if you copy this thread and repost it on the first section of the homepage (I think it's called "Welcome Newbies") you might find some additional responses. Check out Laurie's Lounge too. This is a wonderful site full of love and support and understanding and encouragement.
As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.
aw thanks so so much for making me feel welcome. My children are 14y (girl), 6y (boy), 3y (boy), 1y (girl)..
I have posted on the newbie forum....
Last edited by cruelladevil; 10-28-2009 at 02:30 PM.