Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Jun 16, 2014, 04:12 AM
missbliss missbliss is offline
Member
 
Join Date: Jun 2014
Posts: 7
What am I facing here?

Hi,

For a very long time I've not felt right. My life was stressful, I was constantly moving, living in a war-zone and many family issues all vying for my attention including the loss of loved ones. Throughout I'd gone to the only medical clinic available to me where I was shushed and told - *everything is fine*. This went on for years.

Now I've moved and have access to better care. Though I was able to gauge that my numbers were not great over the years - and since being told *everything was fine* I sort of went along with that mantra - though felt like crap and started wolfing down every kind of supplement, vitamin, healing modality I could get my hands on as the symptoms would come.

To no avail.

The numbers just kept dropping. My family has a history of heart disease and aplastic anemia. I am going to have to wait, I believe, for a specialist to see me - which is why I joined this forum. Till I can get to see a specialist - what can I do to at least feel somewhat normal? Most of the day I just sit and rest. And sighing is a major problem.

These are the numbers out of range right now:

WBC - 4.4
RBC - 4.26
MCH: 31.4
MCHC: 32.7
CREATININE: 1.01
IRON: 54
VITAMIN D: 32.9

HG and B12 - both normal

I've had Epstein-Barr in the past and recurring UTI's.

Any light on what I am going through might be of some help and much appreciated.

MissBliss
Reply With Quote
  #2  
Old Mon Jun 16, 2014, 09:58 PM
sbk007 sbk007 is offline
Member
 
Join Date: Apr 2013
Location: NY
Posts: 322
which numbers keep dropping? Everything looks normal.. I'm not a doctor and can be wrong but those numbers look to be in normal range.
Reply With Quote
  #3  
Old Tue Jun 17, 2014, 05:27 AM
missbliss missbliss is offline
Member
 
Join Date: Jun 2014
Posts: 7
WBC keeps dropping
Reply With Quote
  #4  
Old Tue Jun 17, 2014, 10:15 AM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by missbliss View Post
WBC keeps dropping
Do you have any autoimmune diseases? Any unexplained fevers?
Where do you live now? Are you in the military?
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Tue Jun 17, 2014 at 10:17 AM. Reason: Additions.
Reply With Quote
  #5  
Old Tue Jun 17, 2014, 08:43 PM
missbliss missbliss is offline
Member
 
Join Date: Jun 2014
Posts: 7
Epstein Barr - no fevers
Reply With Quote
  #6  
Old Thu Jun 19, 2014, 04:14 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
How about your neutrophil count? Is that normal?
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #7  
Old Thu Jun 19, 2014, 06:00 AM
missbliss missbliss is offline
Member
 
Join Date: Jun 2014
Posts: 7
Quote:
Originally Posted by Cheryl C View Post
How about your neutrophil count? Is that normal?
Yes. I think - it's 52.
Reply With Quote
  #8  
Old Thu Jun 19, 2014, 10:04 AM
sbk007 sbk007 is offline
Member
 
Join Date: Apr 2013
Location: NY
Posts: 322
Missbliss, If you want more input it would be helpful to explain how long your WBC count has been falling and what the numbers were over time. Your age, things like that.
Stress or depression can cause the symptoms you describe or it could be so many other reasons. The numbers you posted are all in the range of normal.
Even your Vitamin D is perfect.
In the meantime before your able to see a specialist. Try and "do things".
Go outside for walks even if your tired or just sit outside. Also, it seems Epstein-Barr is hard to diagnose so you might want to see a Doctor that has many patients with this syndrome. If you read about Epstein Barr you'll see that what you describe is similar to what others with the syndrome describe.
Hope your feeling better and wish you well.
Reply With Quote
  #9  
Old Fri Jun 20, 2014, 07:03 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
I agree with sbk007 about exercise. I can get out of bed feeling weak and unwell, but a 1/2 hour walk is like a tonic and always makes me feel better.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #10  
Old Fri Jun 20, 2014, 09:33 AM
missbliss missbliss is offline
Member
 
Join Date: Jun 2014
Posts: 7
It's been declining for a few years. I was exposed to chemicals on a daily basis for 5 years, among which were benzenes and glysophates, together with burning refuse. Yes, depression and stress went along with those conditions.

I am 55. I don't have access to my medical records yet, I should be getting them in a week or so then I'd be able to give precise numbers. I do have this from 2011 - WBC 5.40
and this from 2012 - 4.10

My monocytes are always off the charts and that was explained to me being the antibodies of the EBV.

Thank you for your helping me understand.

missbliss


Quote:
Originally Posted by sbk007 View Post
Missbliss, If you want more input it would be helpful to explain how long your WBC count has been falling and what the numbers were over time. Your age, things like that.
Stress or depression can cause the symptoms you describe or it could be so many other reasons. The numbers you posted are all in the range of normal.
Even your Vitamin D is perfect.
In the meantime before your able to see a specialist. Try and "do things".
Go outside for walks even if your tired or just sit outside. Also, it seems Epstein-Barr is hard to diagnose so you might want to see a Doctor that has many patients with this syndrome. If you read about Epstein Barr you'll see that what you describe is similar to what others with the syndrome describe.
Hope your feeling better and wish you well.
Reply With Quote
  #11  
Old Fri Jun 20, 2014, 09:35 AM
missbliss missbliss is offline
Member
 
Join Date: Jun 2014
Posts: 7
I do try to walk as much as possible.


Quote:
Originally Posted by Cheryl C View Post
I agree with sbk007 about exercise. I can get out of bed feeling weak and unwell, but a 1/2 hour walk is like a tonic and always makes me feel better.
Reply With Quote
  #12  
Old Fri Jun 20, 2014, 09:58 AM
sbk007 sbk007 is offline
Member
 
Join Date: Apr 2013
Location: NY
Posts: 322
Your WBC even though a little lower than it was 3 years ago is still in normal range, and very close to what it was in 2012 (2 years ago). Could be you had an infection or cold 3 years ago or even a virus or it could be normal fluctuations.
Those numbers do fluctuate day to day. I don't think that in itself is something to worry about. Exposure to those chemicals doesn't necessarily mean you'll develop any illnesses from it. My advise to you is to find a doctor that you trust so he can put your mind at ease and stick with that doctor.
Take Care
Steve
Reply With Quote
  #13  
Old Sun Jun 22, 2014, 11:15 AM
missbliss missbliss is offline
Member
 
Join Date: Jun 2014
Posts: 7
Ive had a very disturbing episode in the last few hours where i became dizzy and weak in hands and legs coordination very bad. This never happened to me before. Thinking about maybe going to er -on friday also felt weird then it passed. Taking it from minute to minute to see how this goes.
Reply With Quote
  #14  
Old Sun Jun 22, 2014, 04:52 PM
sbk007 sbk007 is offline
Member
 
Join Date: Apr 2013
Location: NY
Posts: 322
missbliss, why not re-assure yourself and visit the Doc. I don't know anything about Epstein Barr other than what I read after your post but there's a lot of info there and it seems EB patients tend to stress themselves out. Its part of the syndrome... In any case if you have any doubts its best to visit a Dr. for re-assurance.
Reply With Quote
  #15  
Old Mon Jun 23, 2014, 04:14 PM
curlygirl curlygirl is offline
Member
 
Join Date: Jun 2013
Posts: 151
My son's Aplastic Anemia started with high Esinophils & Atypical Lymphs (a sign of auto-immune diseases), then went those got lower, his monocytes went very high (into the 16%-19% range). It turns out high monocytes are a sign of inflammation (if you google monocytes and the flu together, this comes up). My son's Aplastic Anemia is brought on by inflammation. As his markers for inflammation (c-reactive protein, erythrocyte sedimentation rate, atypical lymphs) go up, his blood counts go down. When the inflammation goes back down his numbers go back up. Unfortunately after his first attack - my son's Aplastic Anemia seemed to have a sudden onset with a nasty upper respiratory virus - he started getting inflammation with any virus so in the beginning of his recovery he has some acute attacks of pancytopenia from common colds. The Atypical Lymphs are also a sign of Epstein Barr but he's tested negative for ever having it. So basically his Atypical Lymphs and monocytes are reflections of the inflammation in his body. Pretty interesting but may not help you much - I just wanted to point out that high monocytes don't always mean you have mono. It could mean they are causing inflammation in an organ in your body (e.g., bone marrow, or lungs in the flu, for instance) and when they get to a high enough level they start showing up in the blood.
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
Concerns of a parent of an adult child facing a bone marrow transplant Scootin102 Spouses and Caregivers 3 Wed Feb 5, 2014 07:23 PM
Please help me i dont know how to help my father ziad adore my father MDS 85 Wed May 16, 2012 01:55 PM
Facing 2nd BMT Mary D. Transplants 0 Mon Jan 14, 2008 01:42 AM


All times are GMT -4. The time now is 04:45 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