MDS Related ?

Please post here your experiences of MDS as a patient, carer, family or friend

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Wba man
Posts: 6
Joined: 08 Nov 2013 15:05

MDS Related ?

Post by Wba man » 10 Nov 2015 20:29

It has been over 12 months since last post but confused yet again. My Hg is back to 10.2 after reaching the dizzy heights of 11 earlier this year, has dropped slightly every blood test since, still feel confused & fatigued with the problem 2 years after diagnosis. I had abnormal liver count & high immunoglobulins in last blood test, which was repeated and showed the same again. Next appointment is 1st week December. Anyone else experienced these abnormal counts or know what they may mean ?
51Year Old Male - MDS RARS - Still low energy levels, aches & pains. Still confused with the problem but try to remain positive
Posts: 249
Joined: 20 Nov 2008 14:05

Re: MDS Related ?

Post by sophie » 19 Nov 2015 11:18

Hi Wba man,
Not sure if we have ever talked on phone.
These are more questions for the clinical team as reasons can very so much from person to person.
We would advise that if you have not had another biopsy for a while, it would be worth discussing with your team if you need one again - unless they have a good explanation regarding your issues.
I also don't know where you are treated - hope it is in a centre of exellence - or at least at a hospital where the staff is in touch with a MDS expert through an MDT?
Please do give us a call to assist you and clarify these questions.
It is extremely difficult/impossible to answer clinical issues on this forum - as it needs to be assessed by a clinical person with access to all your notes.
I hope to talk to you very soon.
Best wishes,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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