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Polycythemia Vera

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Subject: polycythemia vera
Date: 07/19/2007

                              my husband was diagnosed with pv  about 18 months ago.   He also has diabetes and high blood pressure,  He takes 1500mgs of hydrea  each day and phlebotamy when needed. He has had 2 grandmal seizures along with a tia each time in the past  8 years.  Each time his sugar was very high.  The drs say the seizures couldn't be related to the diabetes.  Soon after that his hand and fingers became numb and painful, with the fingers slightly discolored  and cold. This wasn't related to anything either  nor could they find a logical explanation for the seizures.  Shortly after the last seizure he was diagnosed with pv.  Recently the drs. office messed up on his refill of diabetic meds and he didn't take one of them for about 2 and a half weeks. I was away taking care of my mother.  When I got back  his sugar was high and his hand and fingers were cold, numb, discolored and painful.  The hemotologist said this couldn't be related to diabetes or pv.   I have watched him lose all his muscle tone and strength in the past 18 months.   Noone seems to listen to what we say.   I have found more help on the web. In fact the hemotologist told me to look things up.  Would going to the Mayo Clinic make a difference.  If anyone has had some of the same symptoms, please share.   He stays fatugued all the time  although he still works very hard.  He was diagnosed at 61.   There has to be answers somewhere, right?                              thanks

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Mikesummer
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Subject: RE: polycythemia vera
Date: 08/09/2007
Yes, my husband experiences many of the same symptoms you have described. His hand and feet turn blue and purple and become very cold. He has been on Hydrea for 2 1/2 years....1000-1500mg a day, and is always fatigued. Dr's have told us his pituitary is now completely shut down....no known reason!!! We went to the Mayo Clinic Scottsdale, but did not have enough money for them to find out what is wrong with him. It is frustrating!
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