Thread: MDS
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Old Sun Oct 9, 2016, 01:30 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Ningwa,

Try not to panic. I was a mom in your situation 8 years ago, with some doctors saying MDS and some doctors saying AA. It is very stressful not having a clear diagnosis.

Do you have any blasts or significant dysplasia? If not, there is some recent research that I have read that says an isolated 20q mutation is not enough for an MDS diagnosis, as it is sometimes seen in normal individuals.

Here is the article:
http://www.bloodjournal.org/content/...o-checked=true

If your counts are increasing, I think that is a good sign. I never saw an increase in my counts. Perhaps you were exposed to a toxin or drug 3-4 months ago or maybe you had a bad virus then that wiped out your counts and your marrow is slowly, slowly healing.

Try to eat healthy/organic, get sleep, and avoid any alcohol/drugs/supplements/teas/etc. Be cautious around sick people. Focus on healing. It sounds like you are in good hands with your doctors and their monitoring.

You are young, and that also is a positive thing should you need treatment in the future. I hope things keep improving for you!
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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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