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Old Tue Dec 1, 2009, 02:51 AM
Deanna16 Deanna16 is offline
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Join Date: Dec 2009
Location: New York
Posts: 39
Red face Newbie Story / "not typical" AA presentation

Hi All! I have been lurking on this site since I was diagnosed in this past Sep. '09. My routine physical showed I was anemic and have low WBC (2.8)so I was referred to a hematologist/oncologist. (Same visit resulted in my being tested for MS and breast cancer but that is for another forum )

My hematologist was not impressed by the iron dificiancy but was concerend about the low WBC (ANC 2). I had a history of moderate anemia in the past but never anything with the WBC. After several visits she insisted that they were two seperate issues. I have a very strong family history of autoimmune diseases so she felt statiscally speaking that my WBC was a result of something like that going on in my body.

To get to a "diagnosis" I was pumped full of B12 and had all nutrient levels tested...my WBC got lower (ANC 1.5). I was pumped full of iron pills...hemaglobin only went up a bit but my ferrtin went from -1 to 6, WBC went down (ANC 1.3). During this time I was also seeing a rhematologist who tested me for everything under the sun and was baffled that nothing came back pointing in any one specific direction: sometimes I had a high sed rate, sometimes not; sometimes a positive ANA, sometimes not.

The hematologist had started off saying that we would look at the B12 counts, autoimmune diseases, and then discuss the possibliity of a bone marrow draw and it being cancer...but she strongly felt it was something autoimmunilogical going on.

After taking an 8 week break from blood tests I went back to her office and my iron was low again and my ANC was 1.1. She wanted to start Neupogen but said I would have to have a bone marrow draw first just to make sure something serious wasn't going on, but she was sure there wasn't. She really didn't think I had a cancer festering in me, or lupus or anything else for that matter. She believed (and this is also somewhat of an AA theory too from what I've heard) that my body is just killing off my white cells.

So I get the bone marrow draw and to her suprise I have less than 10% cellularity. The bone marrow of a 90 year old (which is how old I feel!)

I took the news of having AA very calmly, so calmly that she told me that "you don't understand the severity of what I'm telling you" But I did know because I had stumbled upon AA while trying to figure out what was wriong with me all summer...I just didn't think it was a possiblility because most of what I found described it as all counts being low, not just one.

I immediatly did ask her just that, didn't all my counts have to be low? And while it is not typical she stated that some patients do present with just one type (RBC, WBC, platelet) being low.

I did see a "specialist" who I was not thrilled with and he and his pathologist did confirm the diagnosis. Unfortunatly the day I actually saw him my WBC was the highest it had been in 8 months (4.4) because I was not feelign well and it led him to initally believe I had a transient case of AA or bone marrow failure and I was on the road to recovery...what would the chances being goign to see a specialist on teh day my body begins to recover. So he didn't really give me a chance to ask my questions because to him I was fine. When I asked about the bone marrow draw results he said "it could have been a dry spot" and that IF my counts went down again he wanted me to get another one down. He really did not listen to my plight that I did not feel well and that this was the highest it had been a in a while...very frustrating. But again, after more bloodwork and my counts dropping back low (ANC1.0), my hematologist explaining all that had been going on and him and his team looking at my records and slides they did confirm AA. A moderate case, but still AA.

I suppose I am just still in disbelief and it would be helpful for me to find someone else out there with a similar presentation: low WBC, anemic, bone marrow failure. My platelets and RBC have been perfectly fine. I just still wonder if it is something else. For now I am "watching and waiting". I suppose I should be grateful but it's nerve wracking! I have had 10 IV iron treatments, but still feel exhausted more than a 29 yr should be. I amd married, have 3 kids, work full time and go to school part time: I know what my usual tired is, and this is not it.

There must be someone out there like me
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