I have been in remission for nearly ten years now. I was diagnosed when I was 25 years old after a period of stress(I had left my husband). I was hospitalized for a month, given plasmapheresis, vincristine, steroids, and blood transfusions.
Recently it was discovered that I have a blood clot behind my left eye. I'm going back to see my hematologist because as we know the TTP can cause clotting as well as bleeding.
I hope it's not the TTP again because I didn't respond well to the treatment when I had it last time and I can't imagine what it will be like this time.
I don't have any thoughts on what is happening but I wanted to let you know I've read your post a few times and thought I'd let you know I'm thinking about you.
The unknown with our health is very scary, I am going through a few problems myself and my son, we both see a hematologist. If you need to talk I'm here.
How are you doing? Have you been to the hematologist yet?
I saw the hematologist this past wednesday. He ordered about 20 tests to check my clotting factors and they took 9 tubes of blood. My right leg feels hot inside, if that makes sense, so I'm a bit worried about that. I'm going to let him know about that when I talk to him.
Other than that, it's just a waiting game unfortunately. It's really scary.
Waiting is always the hardest part, it seems like we do a lot of that when we are sick. I hate getting so much blood drawn every time we go but they need it to help get answer.
And yes it is scary.
Keep posting and I'm here for you.
I am 27 years old and was diagnosed with TTP last July. I was in the hospital for 2 weeks and also received plasma exchanges, platelets, high doses of steroids, and several blood transfusions. I was able to go back to work at the beginning of December but here lately I have been thinking that maybe the TTP has come back. I have a headache that never seems to go away and have a general feeling of something just isn't right. I am so scared that it might be coming back. I don't know if I could handle going through all that again. So you haven't had a relapse? You only had the one episode when you were 25? That is awesome!
Keep us updated. I really hope that the TTP isn't back.
Well, I got a diagnosis. It's not the TTP but it's as scary. I have lupus anticoagulants. I saw my hematologist yesterday and that is what he told me. He wasn't sure what he wanted to do about it until he spoke with my retina specialist. Well, today I had a voice mail on my cell phone telling me to call my hematologist. They are going to put me on some meds, but just what I don't know yet. My hematologist is going to be calling me tomorrow morning to talk to me.