Home         Forums  

Go Back   Marrowforums > Practical Issues > Questions and Answers
Register FAQ Search Today's Posts Mark Forums Read

Questions and Answers Not sure where to post a question? Post it here.

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Mar 21, 2013, 09:55 AM
Pdaw Pdaw is offline
Member
 
Join Date: Mar 2013
Location: Eastbourne
Posts: 4
Question "Abnormal" Bone Marrow Result but no diagnosis

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.


Last edited by Pdaw : Thu Mar 21, 2013 at 12:18 PM.
Reply With Quote
  #2  
Old Thu Mar 21, 2013, 05:43 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
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
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
  #3  
Old Thu Mar 21, 2013, 09:51 PM
MDSPerth MDSPerth is offline
Member
 
Join Date: Sep 2012
Location: Perth, Western Australia
Posts: 74
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.
__________________
Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
Reply With Quote
  #4  
Old Fri Mar 22, 2013, 11:50 AM
Pdaw Pdaw is offline
Member
 
Join Date: Mar 2013
Location: Eastbourne
Posts: 4
Thank you for your replies Sandi and Marlene

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.
Reply With Quote
  #5  
Old Fri Mar 22, 2013, 12:09 PM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 470
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

Last edited by Sally C : Fri Mar 22, 2013 at 12:21 PM.
Reply With Quote
  #6  
Old Fri Mar 22, 2013, 08:15 PM
tom30 tom30 is offline
Member
 
Join Date: Sep 2010
Location: Brooklyn, New York
Posts: 108
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.
__________________
Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
Reply With Quote
  #7  
Old Fri Mar 22, 2013, 09:35 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
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
Reply With Quote
  #8  
Old Mon Mar 25, 2013, 10:29 AM
Pdaw Pdaw is offline
Member
 
Join Date: Mar 2013
Location: Eastbourne
Posts: 4
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
Reply With Quote
  #9  
Old Mon Mar 25, 2013, 01:18 PM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 470
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
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Bone marrow examination result Sree Bone Marrow Failure 2 Sat Jan 3, 2015 07:22 AM
Confused with Bone marrow report teo MDS 168 Mon May 5, 2014 10:20 AM
Hypoplastic Bone Marrow No Problem? Shazza Tell Your Story 3 Thu Feb 20, 2014 05:20 AM
No diagnosis for Bone Marrow Failure and other conditions too Alicia44 Bone Marrow Failure 4 Mon Sep 8, 2008 04:05 AM


All times are GMT -4. The time now is 02:23 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org