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This topic has 2 replies, 3 voices, and was last updated 8 years, 3 months ago by LeAnn Duke.

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January 6, 2016 at 6:59 pm #28916

Elissa Leffler
Participant

Hi,
My dad, 77 yrs old, lives in Florida was diagnosed last year with MDS, he is also a diabetic and had prostate cancer years ago. When he was initially diagnosed he had a high white blood count( approx. 66) and a low red count. His white count has gone up and down but is consistently high.He was given medication for maybe a month until he began complaining of back pain, which was first lower dics that he received surgery and they were cemented together. Then he had neck pain, same procedure to his neck. Now he has been told he has hairline fractures in his mid back range. He has no energy,is depressed and is in constant pain all the time so he just sleeps . He went from an large,healthy, active man to other slowly diminishing before our eyes.
He has seen 13 doctors , no one knows what to do for him. Currently he is not on medication other than pain meds.
Any information will help…………

January 8, 2016 at 11:43 am #28933

Anonymous
Inactive

Hi Elissa, Thank you for your email with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

January 13, 2016 at 6:14 pm #28959

LeAnn Duke
Participant

Hi Elissa, I was just wondering if you father in law has ever been checked for multiple myeloma. With all the cementing of discs and fractures it sounds different than MDS. Just a thought! I am by no means a specialist it just sound different than any of the others symptoms of MDS that I have read about. I have MDS (RARS refractory anemia with ringed sideroblasts) and at this time it is considered low risk because only my red blood cells are involved. I am transfusion dependent, 2 units a month. The injection they gave hoping it would raise the RBCs didn’t work so I am not on any medication either at this time. I hope you can soon find answers and the doctors can find out what is going on with you father in law. God bless!!!
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