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Old 03-21-2008, 04:10 PM   #1
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Location: Corpus Christi, TX, USA
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Emkat8 HB User
Mysterious blood disorder...please help me find out what I have!

I have always been one to bruise very easily, the doctors always thought my parents abused me because I would have such bad bruising all over my body and my parents really didn't have an explination for it. The tiniest thing will make me bruise. If someone jokingly pokes me with one finger, I'll probably bruise. Thats how bad it is. And I ALWAYS have at least one bruise on my body that I cannot explain. They just show up and they will be big and last for weeks. I get them in weird places too, like my inner thigh that wouldn't be easily injured, so I honestly feel like I have some kind of disorder. When I get really bad bruises they last for months. I hit my leg in Nov. and still have a bruise now in late March. Thats seems abnormal to me.

When I was a kid, I had a prolonged PTT (whatever that means, I'm not too sure), but I was tested again and it came back normal. I also saw a hematologist recently because I was going to have surgery and they were afraid I might have something because of my symptoms. He tested me for Von Willebrand but it showed I didn't have it.

Anyhoo, I had my tonsils and adenoids removed, they said bleeding during surgery was not bad at all. But today, 8 days after the surgery I started bleeding from where they had removed my adenoids. The doctor took out a pretty good sized clot from my nose (probably about marble sized). He said this was very uncommon though...He even gave me his personal number to call over the weekend if I had problems, so I just feel like this is not something normal if he is concerned enough to give me his own number.

I guess it all just got me to thinking...I really wonder if I have something more that the doctors just haven't found. Any ideas? I would really love to find out whats going on..Any help is much appreciated!

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Old 03-26-2008, 04:22 PM   #2
Yvette D
Join Date: Jun 2007
Location: USA
Posts: 68
Yvette D HB User
Re: Mysterious blood disorder...please help me find out what I have!

Hey Emkat, I can see why you're concerned. I would be too. I wish I could help but the only advice I could give is to continue seeing your doctor or get a 2nd opinion with a different one. Especially if he doesn't have answers for you. I hope you get better soon.

Old 03-27-2008, 08:21 PM   #3
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Join Date: Mar 2008
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Emkat8 HB User
Re: Mysterious blood disorder...please help me find out what I have!

Hi Yvette, thanks for your concern I've been trying to do some research on my own to see what I can find out...No promising leads yet, but I'm still looking!

Old 03-29-2008, 06:46 PM   #4
Join Date: Mar 2008
Location: Glen Burnie, MD, USA
Posts: 3
FactorIIdef14 HB User
Re: Mysterious blood disorder...please help me find out what I have!


I have all of the things you described. Child services used to always come to my house when I was little because they thought my parents were abusing me. I have a few questions and maybe I can better diagnose you. I have a very rare blood disorder only 26 cases have been reported in the world. I hope you do not have what i have but I want to help you find out what is wrong.

Do you have severe menstrual bleeding?

When you get a bruise does it sometimes move?

Do you get nose bleeds? Or did you have them as a child?

Have you ever broken a bone or sprained your ankle etc.. If so what happen?

Old 04-06-2008, 11:01 AM   #5
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Join Date: Mar 2008
Location: Corpus Christi, TX, USA
Posts: 19
Emkat8 HB User
Re: Mysterious blood disorder...please help me find out what I have!

I take BCP to help regulate my menstral periods, but before I started taking them I did have some problems, but nothing too serious. I would bleed for a long time and it would be somewhat heavy, but nothing uncontrollable. I was anemic though for a long time, I just recently have got to the point where I have normal levels.

As for a bruise moving, I'm not too sure what you mean??? Like if I touch it does it migrate??? I've never noticed this to happen.

Nose bleeds are pretty rare for me. I can only remember about two times I ever got a nosebleed in my life.

And I broke my arm once when I was a kid. It was a very minor fracture, and nothing really seemed to be too out of the ordinary when it happened. I had some swelling, but it went down, I had it casted and that was the end of it. Healed normally and everything.

I did want to mention also though that I always have blood in my urine too. Not amounts that I can see, but I will go to the doctor feeling like I have an infection, and once my urine is tested it always has blood in it. I went to a urologist and from what he told me, I don't have an actual infection in my bladder or anything like that. The cultures of my urine don't show anything abnormal, yet the blood is still there. I don't know if this might be something related to a disorder???

Do you mind me asking what disorder you have??? I would like to do a little research as it sounds so rare (being a student in the healthcare field rare things are sooo interesting to me to read about!)

Thanks for your help!

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