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Mylofibrosis

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Subject: mylofibrosis
Date: 11/17/2007

I am careing for my 75 year old husband who was dx 10 yrs ago with Polycithemia Vera, and is in second stage now of mylofibrosis.  In the last 6 mons, he has lost over 40 #'s actually dropping over the course of illness from 250 to now about 148.  My problem now is the confusion and memory problems he has developed in the last month.  Yet when ask if this is part of illness, was told no.  We go to a Cancer/Blood Dr. this last time 2 mos between visits and to a regular GP for other care, and have made an appointment with a physcotherapist,  want to know what kind of dementia I'm dealing with. They tried Hydrea, and couldn't control the dosage so was stopped.  His HGB is what they watch and it's 11.2 at last visit, when  it did drop below 9, he was given Proctrit shot, but the last time was told that Medicare no longer would pay for it.  Then next visit HGB was back above 10.   I guess did read one message about memory problems, but wasn't a signed in member so couldn't backtrack the message, When did sign up, I ended up with new discussion message screen.  did read about the lady with elbow problems, my husband has gout regularly and wonder if instead of feet and fingers where he was also effected, could be elbow.  guess I'm just looking for help as a caregiver, who is getting frustrated with lack of knowledge. 

thanks for any help,  IowaWife

Subject: RE: mylofibrosis
Date: 02/08/2008
Please call the Mayo Clinci in Jacksoonville, Fl.  and get an appt. with Dr. Riviers.  Alot of this is treatable.
Caregiver
Caregiver
JuJusdaughter
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Subject: RE: mylofibrosis
Date: 02/18/2008

My mother has myelofibrosis and she has the memory problems too. We believe its caused by lack of oxygen to the brain since her red blood cells are always so low. Blood carries the oxygen to the brain...I don't know if it's true but it's all we could come up with.  She gets very confused and seems very preoccupied and when she is like this, her blood work reveals that she is in need of a transfusion. After her transfusion she feels better a day or two after and becomes more alert and "sharp" but she usually can't recall much from the week before...conversations or details that most people would have no problem remembering. 

Good luck to you both!

ju ju's daughter 

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