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Old Tue Aug 23, 2016, 03:51 PM
Deb Deb is offline
Join Date: Aug 2016
Posts: 1
being watched

In the past five years my blood count went from 4500 down to 2500, this year. I told my doctor I was concerned, he sent me to a Hemo/onco, but between the two appointments I decided to eat much better...drank a lot of cold-pressed juices and veggies, etc. When I got the results back from the hemo/onco..my blood count was back to 4500. Three months later it was about 4.1.

No abnormal WB cells, but slightly high monocytes. She is calling it Monocytosis. My regular intern does not think they are very high. Why is there such a discrepancy in opinions on what I think is a serious matter? And why are monocytes high? I rarely get sick, but I do have chronic pain due to permanent nerve damage after a cervical fusion.

She is "watching" for mds, although I have no symptoms except that my blood count had fallen gradually every year. But it went back up.I will admit my diet had been very poor.
Although my blood count went up, she is still putting me on watch. My monocytes went down and are just above normal high. But she is still asking to have my blood taken every three months, and possibly every six months if things remain the same.

I was very afraid about the possibility of having MDS, but she said not to worry..ay least not now. That is hardly comforting! Her wording is concerning .

I do not have any abnormal WBC. nor platelet issues.

Can I potentially have mds...in an early stage? She is not giving me a bone marrow biopsy as she doesn't seem to think it is necessary. I feel I am being given very mixed messages..on one hand she says to "stop worrying" and "get a different hobby" (because of my extensive research on the internet)...but then she says things like "have you been exposed to radiation?" and "I think the monocyte issue is in your bone marrow".

I am VERY confused. I am continuing to eat much healthier to keep my blood healthy. Is there anything else I can do? And am I crazy for feeling she is giving me mixed messages?

I am 61 years old. Any and all comments would be appreciated. This is my first time joining a forum, and I realize I am yet to be diagnosed and hope not to be..however, I am not clear why she is still watching for mds. I need some support and input by people who know more than me!! Thanks.
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Old Wed Aug 24, 2016, 04:45 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Deb,

Are your counts pretty much normal now? Why does your doctor suspect MDS? The only way to diagnose MDS is from a bone marrow biopsy - so if your counts are nearly normal and your doctor doesn't seem too concerned about getting a BMB then maybe you don't have too much to worry about at the moment - eating a good diet sounds good under any circumstances - and there may be some nutritional supplements and/or tests you doc can do to look for things like a vitamin d deficiency - there are other posts on the board about nutrients that can be low that might impact blood counts - I'm not an expert in that regard.

Sounds like your doctor is watching your counts to see if she needs to do more tests - not necessarily watching for MDS to develop. How are you feeling? You can drive yourself crazy looking up stuff on the internet - so you should be careful about that too.

Hopefully this is all a worrisome glitch and not necessarily something serious.

Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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