New here and my story.

[disturbedme]

Hi all. I am new to this board.

I am 26 years old, married for three years, and have no children.

I've had a low white blood cell count (and low ANC) for as long as I can remember. I first remember being told I had a low white blood cell count when I was around 12 years old. I could have had a low white blood cell longer than that, but of course when you're young, you don't really keep track of that kind of stuff. Your parents do, but my parents never told me any of that. And my blood counts never got me into trouble.

I didn't really become aware of my cell problems until after college and then moving out of state and getting married with my husband. I became ill with many, many symptoms, most of which I have attributed to my lyme disease and gluten intolerance. I started seeing a doctor once a month for my health problems and getting blood tests monthly and that's when it became evident that I had a constant low white blood cell count, as well as constant low ANC. For a couple of years, we kind of just shrugged it off and most doctors would see it but not really say much about it, but it eventually got to the point where I felt the need to have it checked out.

My white blood cell counts are stable but always LOW, in the range of 1.9 - 2.9 and never higher (normal range for WBC is around 4.0 - 10.5). My ANC are usually low as well in the range of .9 - 1.8 (normal range for ANC is around 1.8 - 4.0). I also have tests that show mildly low RBC and platelets off and on. Some tests will show normal RBC and platelets and some tests will show pancytopenia, even with low hemoglobin and hematocrit.

So I saw a hematologist (who I really, really like) and he did testing and couldn't find anything, so he suggested we do a bone marrow biopsy. We had one done and everything came back normal with that BMB, showing unknown cause for neutropenia and pancytopenia. All it showed was hypocellularity, 10 to 20%.

Since he couldn't find a cause, he referred me to Johns Hopkins who I've now been seeing for a few months. So far they have not found anything abnormal with regular blood tests or blood smears, but I just had another bone marrow biopsy done Monday, April 29, 2010 (where they took FIVE vials of bone marrow) to do a bunch of testing including chromosome testing and a bunch of other scary things. I won't get those results for a month.

One of the things that Johns Hopkins tested me for a month ago that really scared and worried me was Fanconi Anemia. The blood test they did for that came back negative, but they are testing me for it again through bone marrow and want me to have a skin biopsy to check for it through skin. Supposedly in a very small percentage, you can get a false negative so more testing is needed. I have never been more scared in my life to think I could have FA as the reading I do on that is completely terrifying. All of this is terrifying, don't get me wrong, but FA is ultimately scary to read about.

So that's where we are right now. I asked my hematologist what he thought about me having FA and he didn't really know a whole lot about it, but said that he'd be really surprised if I had it. He continues to remind me that even though I have a low white blood cell count and low ANC count, they usually are stable. Meaning, they are low, but they usually stay within a range of 1.9 - 2.9. And my regular doctor seems to think that maybe this could be normal for me, but I very much doubt that. There has to be a reason, a CAUSE for this happening.

I'm not happy with everything that is going on in my life and I'm having a hard time because I'm so young and my husband and I have only been married for three years. I hate that I have to deal with all of thest tests and and it scares me to think that I could have something fatal...

[Neil Cuadra]

It must be very hard having an undiagnosed condition like yours, not to mention potential diagnoses that are frightening to contemplate. But it's clear that you have something good going for you: the stability of your condition.

You've been living with low counts for many years and could very well continue that way without putting a name to what's wrong. With a low ANC you have to be careful to avoid infections but like gluten intolerance you learn what's necessary to keep yourself out of trouble.

When you get the chromosome results I hope you'll let us know what they show, and whatever else you learn. It sounds like you are in good hands and are educating yourself. I know it often involves reading information that's frightening (I've had those scares myself) but in the long run it can only help you to understand what the doctors are up to, as they try to learn what's wrong and see if there's treatment you ought to have. I hope you will find a way to stay positive and not assume the worst.