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Old Wed Jun 29, 2016, 10:22 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi KatailS,

I tend to agree with jamjjb and wouldn't panic yet.

Did you have a bad virus/infection a few months ago? Were you exposed to any chemicals or were you taking questionable supplements?

A small PNH clone is a sign that you have/had an immune attack going on. Sometimes these can be seen in healthy people, so is is not always an ominous sign. If this does turn out to be serious, having a small PNH clone is a positive sign that you will respond to immune suppression.

The elevated MCV indicates that your marrow is struggling. It is possible that your body can recover on its own, but it will take time (months).

I would be religious about the Vitamin D, iron, and B12 that your doctor is prescribing. These may be able to turn things around. Again it will take months (maybe 3-6) before you will be able to tell whether it is working. So you will learn patience

Also, don't drink any alcohol. Alcohol suppresses the marrow and stresses the liver. I would focus as much as possible on eating healthy, exercising, and getting plenty of rest. Be kind to yourself. Try not to stress. Hopefully your body is strong enough to turn this around on its own. Then you can celebrate with a glass of wine, and it will be the best wine that you ever tasted!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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