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Old Wed Jun 29, 2016, 11:20 PM
KatailS KatailS is offline
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Join Date: Apr 2016
Location: Avon, CT
Posts: 41
Thank you, Hopeful

Quote:
Originally Posted by Hopeful View Post
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!
No infection or virus, no exposure, no supplements that I can think of prior to the start of this. The weird thing is that for the two years prior to the blood work discovery I lived the healthiest lifestyle possible... I lost 40 lbs and looked and felt better than I had in years! In fact my mother in law even suggested the pancytopenia was due to my new low carb habits and all the 'ruffage' I was eating
I have been religious about the B12, D, C, and iron since my March 2015 BMB and stopped all alcohol as well.... but my May 2016 BMB was worse. I think that is why I am more concerned.
That all said.... I will keep plugging along and hope for the best.
I really appreciate your reply and suggestions!
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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