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Old 01-14-2010, 10:48 AM   #1
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A diagnosis of leukemia is not always what it seems

For the benefit of anyone who's interested or who might be in the same position as me, I have today been told that, despite seven years of blood tests which all indicated that I have some form of leukemia (CLL/LGL), in fact I do not and my blood is relatively normal. The previous tests had said that I have large numbers of large lymphocytes and large granular lymphocytes as well as low neutrophils (30%). An oncologist had said it was leukemia and that I needed six-monthly blood tests to watch for it moving into a more advanced stage of the disease.
I COULD SCREAM!
I should be happy but I just feel annoyed that I have spent seven years going through these tests and living with the idea that I am carrying a potentially fatal disease.
These latest tests were carried out as a result of a recent second case of papilloedema (optic nerve head swelling) and a thorough analysis of the possible reasons for this occurrence. One route that the analysis took was to determine if the suggested presence of leukemia could be the cause of the papilloedema. Six weeks ago, I took my pile of blood test results with me when I went to see a professor of haematology in the university hospital where I am being treated.
He was stunned to see those results because the routine blood tests at the hospital had not indicated any signs of leukemia. However, he said that the external results did indeed suggest LGL leukemia but that he would need to run 'genetic' tests on the lymphocytes before he could be certain.
Today was the announcement of the results of that complex analysis. He told me that, although I have higher numbers of large lymphocytes and large granular lymphocytes than normal, the molecular analysis shows that all of my lymphocytes are healthy. He regards the presence of those large cells as a familial abnormality of no significance. So I can continue annual blood tests if I want to but the inference was that it is not necessary.
There is no reason to think that the large lymphocytes were implicated in the papilloedema so I am still left with no answer to that mystery.

Last edited by TopGeek; 01-19-2010 at 09:17 AM. Reason: grammatical correction

 
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Old 01-15-2010, 09:46 AM   #2
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Re: A diagnosis of leukemia is not always what it seems

Wow, how awful for you. A misdiagnosis is frustrating anyway but to be diagnosed with something that alarming and think you had it for seven years. I hope you find the true source of your illness.

 
Old 01-22-2010, 06:46 AM   #3
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Re: A diagnosis of leukemia is not always what it seems

Thanks for your sympathy. It seems that the condition is known as Large Granular Lymphocytosis.

Last edited by TopGeek; 02-18-2010 at 05:27 AM.

 
Old 03-08-2010, 11:25 AM   #4
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Re: A diagnosis of leukemia is not always what it seems

Just to further clarify - it seems that it is only classed as leukemia when there is clonal proliferation. That's when the cells divide and multiply.

Last edited by TopGeek; 03-24-2010 at 10:55 AM. Reason: typo

 
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