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Old Tue Feb 10, 2015, 08:22 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
I'm really sorry you are feeling so unwell, Pam, and I hope your doctors find something simple that can be fixed! Have you ever had a bone marrow aspiration and trephine?

FYI for me the unwellness - feeling "off" - started at least 2 years before MDS diagnosis. I used to feel vaguely nauseous and sometimes a little dizzy - especially in the mornings - and then as mentioned previously by the latter part of the day my legs would be like jelly. My heart used to beat really 'heavily' sometimes and I especially noticed it in bed at night to the point where I wouldn't be able to get to sleep. I also used to get hoarseness in my voice as the day went on even though I drink lots of water.

Have you tried taking Echinacea 5000 mg capsules - a natural remedy which can help to fight some infections? I've found it very beneficial since diagnosis and the realisation that when I'm becoming unwell I need to do something about it.
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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.
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