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Sorry read above with no clear diagnosis, my rectum bleeds at times others it doesn't but still need blood n lots, im 57 started at 53had heart attack at 55 1/2. Major r lower abdomen pain n upper respiratory my r. Bad pains, 8 endoscopy all negative plz help need advice three different size shaped blood cells n pale cells new abdomen troubles severe pain moving hard to pee n yes stage 3 almost near stage 4 cud. Mild heartfailure new 2 yrs now w cold n TB inactive....sure im forgetting a lot… read more
Hello Doreenharner, I understand your need to ask for help because PNH, besides being very disabling and rare, often leaves us feeling alone, especially during the worst moments. I hope you are stable at the moment. The pains you describe are related to PNH symptoms. Abdominal pains are usually very painful, I know from experience. And they tend to spread to all areas. However, if you explain these symptoms to your doctors, they might be able to perform a routine ultrasound to see how your body is doing.
I also suffered bleeding on occasion, and when I had aplastic anemia, I had many blood and iron transfusions. Your body is trying to recover, and my best advice in these cases is to try to lead as calm and peaceful a life as possible, both physically and mentally. Love and peace, as you wish for us, help reinforce positive thinking. I hope they can offer you some treatment soon. I wish you all the best, my friend.
How can you get a clear PNH diagnosis when you've had years of symptoms without answers?
It sounds like you've been through an incredibly difficult journey with ongoing bleeding, transfusions, blood clots, and severe pain without a clear diagnosis. Your strength through all of this is remarkable.
Getting a PNH diagnosis Show Full Answer
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