Second Opinion Helpful?

[Marilyn Satterfield]

I was diagnosed with MDS high grade (RAEB II)with Excess blasts via bone marrow biopsy by a hematology/oncologist on call when I was in hospital for aFib flareup. I have received two rounds of Vidaza. I am wondering if it would be wise to go to MDAnderson for a second opinion to confirm diagnosis and treatment plan. How often is MDS misdiagnosed?

[Sherry Pratt]

Marilyn.
After being diagnosed with MDS, I actually had 3 opinions. I believe it is imperative with this disease. Email me if you want further details. Pratt8075@aol.com

[Malissa Kirszenbaum]

Hi Marilyn. I am sorry to hear of this. My husband is currently undergoing tests and MDS is one of the diseases that they are watching for with him. When I read your post and saw that it was found incidentally with an a fib issue I wanted to ask, if you do not mind, how long you have had a fib and whether the onset has been relatively new. My husband experienced a fib very suddenly last spring, both a fib and a fib flutter. They had a hard time getting everything settled so he wound up having the flutter ablation surgery. It was during this time that they discovered that his mild and Nemea got a little worse. They wanted him to follow up in February and he did which ultimately led us to the hematologist/oncologist practice. Anyway if you have a moment and you were OK with having a discussion, that would be so helpful. I am very sorry That you have received this diagnosis. Please keep your chin up your prayers often.

Lyssa

[Marilyn Satterfield]

I was diagnosed with Sick Sinus Syndrome which included aFib and aflutter almost three years ago. I did have a low white count at the time, but no one was concerned. I had a pacemaker inserted. A year later I had aflutter ablation and still had white count of 3… no one was concerned. This December I spiked a fever of 103 for no known reason and went into aFib with rapid ventricular response. Hospitalized twice and endeded up in heart failure and all blood counts suddenly crashed. That got someone’s attention at the hospital and hematologist/oncologist was called in. Subsequent bone marrow biopsy and a bunch of other tests revealed RAEB-2 or High Risk MDS with Excess blasts. I also developed paraneoplastic polymyalgia Rheumatica which was crazy painful. Anyway, that is my story. I don’t know that aFib and MDS have any relationship other than blood’s relationship to heart. Someone more knowledgeable than I might speak to your question better

[Beth Stanaland]

Sherry, I just emailed you because I am interested in hearing your thoughts on getting a second opinion. Thanks! bethstanaland1@gmail.com

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