[Concerned Daughter]

Again – thank you so much Neil — you are so knowledgeable and helpful to us who are new to this site. By the way, the info you emailed to me opens with various characters imbedded in the text. Much be something with the translation …couldn’t read it….however, I appreciate you taking the time to email additional info on MDS.

[Concerned Daughter]

Thanks again Neil for all the information….I have a question for you…are you a Doctor? I am amazed at how much you know and the terminology you use!! My mom is at her hematologist now and we should know more after my sister gets answers to the questions I gave to her. My mom’s family doctor saw her yesterday & is very concerned about her liver. He feel her cirrhosis of liver plus the MDS is very bad and her liver might be failing. He said something about it might have been releasing ammonia and that caused her confusion last Saturday. He ordered her an MRI to see if she might of had a mini stroke and some additional blood work to check if for other things. Also, I wanted to tell you I am sorry about your mother not doing well. I will keep her in my prayers. It is odd that you mentioned she has multiple myloma…my mother’s twin sister died of that 7 years ago and her other sister died last year of liver cancer! I wonder if all this is connected????

[Concerned Daughter]

By the way, I will send you my email address privately as I don’t want it to be public. I don’t know her white blood count yet…I will ask the dr. today. Also her risk score was <5% ..

[Concerned Daughter]

Thanks very much for the points of discussion with the doctor. I am going with her today to her family dr. She has had numerous TX in the past as her hemoglobin has been up & down over the last few years. It was just recently (last fall) that she was complaining of being tired & she had bruise marks on her arms. It was just the end of last year where they DX her with MDS. She has RARS classification and has been having problems the last few weeks with nose bleeds. She hasn’t had a platelet TX yet…I heard those only last a few days. Is that true? Also, she never had chemo or radiation when she had breast cancer (just had a mastectomy) so that didn’t cause MDS. She can’t take certain drugs due to her other health issues. Why is it important to have filtered blood when she has TX? I really appreciate all the info….sounds like you are one of the experts on this disease. Thanks for your prayers too!

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