Who can tell me why?

[virginiawang]

I've struggled against anemia for over 8 years. Once I was given a coagulation test, which showed that I had a prolonged bleeding time. I had to take antibiotics for 3 years to check infection that occurred all the time. My ears bleed from deep within, so an ENT doctor cuts into my ears with a long knife, to break the blood clots. Then he sucks them out with a machine. This is done on a regular basis. Obviously I do not only have iron deficiency anemia, with which I’ve been diagnosed since the very beginning. I believe all doctors know by heart what sort of disease I have, but none of them gave me a definite diagnosis of Aplastic Anemia. It is really not fair to attribute all these symptoms to my imagination. It is true I am not given a bone marrow biopsy to make sure everything, but I think doctors can tell whether I am iron deficiency anemic or aplastic anemic by their expertise. Why can’t they speak the truth? Do any of you know why?

[Buh4Bee]

One suggestion is to find the best doctor in the field and go see him/her. Find a way to pay and drive or fly. I have two incidents with serious health issues concerning myself and my husband and we went to the best. First we were given awful advice- could have killed me. Then we sought out the best and we both have no more issues. Find someone who can answer or at least explain why there is no answer- lack of research...
If you need to see a couple of doctors, find the main doctor and make the others collaborate. Doctors respond to pressure. Stay away from interns, always. It's your health!

[virginiawang]

I've tried. All doctors knew by heart what sort of disease I have had, but they just avoided it. The problem does not lie in their expertise but in something else. Why? I've had all the symptoms of Aplastic Anemia, but I could not get a diagnosis with a doctor's certificate. Does anyone know something I do not know in the medical world? Are doctors protecting themselves by doing so? You cannot deny that Aplastic Anemia is a big trouble for any doctor.

[soundofmusic]

I've struggled against anemia for over 8 years. Once I was given a coagulation test, which showed that I had a prolonged bleeding time. I had to take antibiotics for 3 years to check infection that occurred all the time. My ears bleed from deep within, so an ENT doctor cuts into my ears with a long knife, to break the blood clots. Then he sucks them out with a machine. This is done on a regular basis. Obviously I do not only have iron deficiency anemia, with which I’ve been diagnosed since the very beginning. I believe all doctors know by heart what sort of disease I have, but none of them gave me a definite diagnosis of Aplastic Anemia. It is really not fair to attribute all these symptoms to my imagination. It is true I am not given a bone marrow biopsy to make sure everything, but I think doctors can tell whether I am iron deficiency anemic or aplastic anemic by their expertise. Why can’t they speak the truth? Do any of you know why?

I am sorry to hear of your problems Virginia, It is certainly upsetting to be ill, untreated and undiagnosed. I think the difficulty is that you are an exception to the normal rules of anemia. Normally, in most anemias, the platlet count increases over time. The doctors may doubt that you have aplastic anemia either because you are not responding to the passive treatment, you may not have the history of other sufferers or of your long history of this illness. There are many kinds of anemia; is there a research hospital in your area? If not, write to a head hematologists at one of the larger hospitals and see if you can get into a free research program. Then all tests and treatments will be covered, and travel expenses if needed.

[virginiawang]

Bone marrow biopsy is a painful process, without which no doctors will give me a definite diagnosis. However I am simply bewildered by the fact that all doctors and dentists know that I have bleeding problems but deny even their slight knowledge of it. For example, a dentist filled a special sort of material into the root of my front tooth one of these days, for he knew I could not be treated with root canal treatment, and then he learned that I bleeded inside my head. He was scared, when I told him my both hands and one foot became numb, and he removed the material as soon as possible, when I returned to his clinic. He begged me to go to a bigger hospital because he thought it was a slight stroke. I told him my brain sometimes bleeded. He knew that I bleeded, but he did not want to admit it in a formal manner. What do you think they fear?
I recovered after a good night's sleep.