"Abnormal" Bone Marrow Result but no diagnosis

[Pdaw]

Hi

I hope that you don't mind me posting - I have recently had a BMB due to mixed blood test results particularly over the last year or so - Low WBC & RBC, Low HG readings, Low B12 (was given B12 loading treatment successfully) and apparently have always run a little "below normal" since 2007 - but only been aware of symptoms for the last 18 months or so - starting with hair loss, constant sore throats, fatigue and light headedness constantly.

4 weeks ago the Haemotologist decided that a BMB was appropriate as even though the B12 levels were within range my MCV was running high and HG was 11.4, WBC 2.7, neutrophils 1.6x10 9l.

The reason for my posting is that when I went back to get my result he said that the BM result was not normal but "No Diagnosis" they did not know why and that he was hesitant to diagnose MDS at this stage because of the implications to me and wants to follow a "watch and wait" treatment.

I am still waiting for a copy of the BMB results and a copy of his letter to my GP (any day now). My confusion, as always when you come home and think about these things is what part of the test was abnormal?

Whilst I do not want to have a positive diagnosis, obviously, and I am a little embarrassed to post this question to you when you are living with a positive diagnosis, but I wondered if any of you had had a similar experience i.e. an abnormal bone marrow result but no diagnosis prior to being positively diagnosed? I would be really grateful to hear.

[Marlene]

Do you know why your B12 runs low? Also, have they checked others like folate, zinc, iron, or copper?

There's some recent discussion on B12 on this thread:
http://forums.marrowforums.org/showthread.php?t=3503

[MDSPerth]

I am far for an expert, but perhaps they are awaiting the cytogenetic (chromosome) results to be returned. These can take three to four weeks for a result after the BMB. If there are chromosome aborations then this can be indicative of MDS.

[Pdaw]

I do not know why my B12 levels were so low but they are now within normal range after the loading - It appears that my WBC and RBC and Hg historically have been running low even though the B12 levels have been restored with the loading jabs that I've been having over the past 6 months. I also received an iron transfusion in September and the ferritin levels are also OK now.

In the absence of "the letter" I am in the dark, a little, as to what the BM report found ie. the information needed to score for MDS and also what did it show that was abnormal.

I just wondered if anyone had experienced "abnormal" results but with no diagnosis initially that did develop into MDS further down the line? - I guess what I am trying to ascertain is whether there is a possibility that my situation could develop into a positive diagnosis in the future or whether it just isn't MDS fullstop....need to get my hands on the report to answer that..........

Thank you for taking the time to reply as I am going round in circles a little.

[Sally C]

Hi Pdaw,
It took 6 months to get a firm diagnosis for my husband. I'm sorry to tell you his diagnosis was MDS. His local expert on MDS sent us to Medical College of Virginia with no luck. It wasn't until we were accepted at The National Institutes or Health in Bethesa, Md. were we able to get his diagnosis - 4 months after starting transfusions.
If you do get a bad diagnosis, please keep the faith as they have made great progress in dealing with these blood diseases. My husband needed about 130 transfusions in a 2 year period and was at one time on his onologist's "death list". He is now transfusion independent with 2 of the 3 lines in the normal range (all were affected at one time). Platelets at last check were 108,000. His lowest was 4,000; RBC lowest was 6.5 and neutrophils hit 0.0.
Please keep the faith and know that you have a wealth of knowledge and caring people on the Forums.
God Bless,
Sally

[tom30]

Pdaw, My doctor initially said my BMB was a mess (this was over 4 yrs ago) he also indicated it looked like MDS he has since backed off the MDS diagnosis and now thinks it might be a auto-immune condition attacking my wbc and platelets but never rules out MDS at some point. All of my counts were low. My RBC and HBG has risen from 3.5 and 12 to 4.6 and 16 and are normal now. Based on what I read this board and elsewhere I made various changes- 1. no alcohol 2. more exercise 3. adopted healthier eating habits which took a long time but I think the big hitters are no processed food, eat mostly organic meats and vegetables and fruits, no sugar. 4. try to reduce stress. It took a long time for my numbers to start moving in the right direction.

[Chirley]

Hi, I was told "possible" MDS for 6 years. Then BMB said MDS RARS, then next one said MDS RCMD, then next one said MDS RAEB. Then I was found to be copper deficient. Having copper replacement therapy. BMB still states MDS RCMD but peripheral counts good and no longer requiring transfusions.

It's almost certain I do not have actual MDS but more like a pseudo MDS that is treatable.

Hope this helps, sometimes chasing a diagnosis is very frustrating.

Regards

Chirley

[Pdaw]

Thank you all so much for taking the time to reply to my post -

Sally I am sorry to hear that your Husband has had such a terrible time but so pleased that he is now transfusion independent and wish you both my best thoughts and wishes going forward. Did your husband have to have more BM Biopsies to reach the diagnosis or was it just diagnosed via the Blood tests?

Tom and Chirley - it sounds like this is a long road to travel as you say "chasing a diagnosis" is very frustrating as you do not know what you are dealing with, however much you do not wish for bad news.

Regards
Petra

[Sally C]

Hi Petra,
Thank you for your kind words. We are very blessed.
Don had 3 biopsies before they came to a diagnosis - the last at The National Institutes of Health where they diagnosed the MDS.
I wish you the best as well - you have found the right place for support and knowledge.
God Bless,
Sally