Myelodysplastic Syndrome Community
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Avatar universal

MDS and worsening symptoms

I am 30 and just recently diagnosised with MDS.  I have WBC at 1.7; hypocellular bone marrow and no iron in my bone marrow.  I go to Moffitt in a week and a half but over the past few weeks I have been experiencing more weakness, extreme fatigue, dizziness and trouble concetrating/focusing.  
ex:  I tried to enter a date in the computer at work the other day and spent several minutes looking at the computer and the paper trying to figure out what to do.  
This is very unlike me, I work full time, go to school full time (2 classes left until I have my BS!) and I have two young children (7 and 3).  I am normally very active and sharp.
I feel like I am losing my self and I'm become withdrawn and moody.  Any ideas on what is wrong with me?
Thank you for your time!
3 Responses
351246 tn?1379685732
I am sorry to hear that you are having a bad phase while on MDS. It would be good if you do not wait the one week and ask for an earlier appointment at the cancer center. You may need urgent blood transfusion, and medications to control the symptoms and improve prognosis. If the appointment is not possible, please urgently consult your family doctor or go to the ER. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
Avatar universal
I am diagnosed 3 years with myleodysplastic syndrome,this past month I had 3 big drops in red cell count, it recovered to 103 ,and im wondering if this is normal ,if its getting worse??maybe//I really don't know and my drs cant tell me anymore than i know...
8750337 tn?1399659891
What type of Doctor are you seeing and treating your MDS? If there is any questions or information you require, I may or may not know, but will do what I can to either help, or point you in the right direction, feel free to reply, and I'll get the email through the site.

I have noticed over the past 14 years, there are several way Blood is counted, the standard I have found in most places, regarding Red Blood Counts are in the range of 4.2 to 5.9 million cells/cmm.

However the Lab my Oncologist/Hematologist uses the count as 14.5 to 16, mine is at 8.1 and past time for a transfusion. The blood counts we with MDS first look at is RBC, WBC and Platelets, of course the report is normally two pages long. My body also has an inability to process the body's minerals through eating. Such as Sodium, Folic Acid, Calcium and so on.

I am given Vidaza and one I forget the name of, via a drip into a port inserted into my chest, and give myself Procrit injections daily.
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