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Old 09-09-2012, 04:54 PM   #1
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Unhappy PV suffer, have troubling eye problem?

Hi other PV suffers, I'm hoping you could help me out, I suffer from chronic Migraines on a daily basis, and went and seen a consultant Ophthalmologist and sub specialist in Neuro Ophthalmology,I have a twitching right eye lid, they tell me its related to my headaches, they say my headaches are related to my PV, like my high blood pressure. Are there anyone that suffers the same kind of problems?
MY symptoms of my PV are
chronic daily headaches/ migraines
High Blood pressure
High in red blood cell
high in haemoglobin
High in Iron
Red palmy hands/ and face
Burning finger tips and toes
Body aches and pains
Muscles spasms/ tremors
Eyelid twitching and raised eyebrows.
electric shock sensation in hands and head.
numbness in hands/ feet in the morning when waking
can sleep right through the night, unless i'm woken by numbness or spasms.
dry mouth/ thirsty sometimes
awful taste in mouth metallically
tired all the time.

 
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Old 09-10-2012, 06:31 PM   #2
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Re: PV suffer, have troubling eye problem?

Hi!My name is Randy and am 64 yrs old.I have been PV for 12 years now.I do suffer many of the symptoms as U have listed.I do suffer headaches but not to the point of calling them migraine.My most nerving issues are severe fatigue,random itching (arms & legs),tingling in gingers and toes,morning dizziness and currently have enlarged spleen.I am on 1.5mg
anagrilide,two 81mg aspirin,3mg xanax and 50mg zoloft.I like U sleep good thru the night.I can empathize with U and we are lucky this disease can be treated.My eyes do not twitch;but,do itch quiet a bit.
Best of luck and God Bless;
Randy

 
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Old 09-11-2012, 05:00 PM   #3
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Re: PV suffer, have troubling eye problem?

thanks Randy, so you had this disease for a number of years, how have you managed it? do you work? Do you have regular vensections? how often do you see your haematologist? I have seen mine a couple of times and see him again in December, the weirdest thing I think is that Jak2 test came back Neg, so how do I have it? I'm sure you would know a lot about it by now. I Now begining to have a bit of a sleep problem at night, and waking up really tired, and tired all day long. anyway must go take care and god bless you too.

 
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Old 09-11-2012, 07:00 PM   #4
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Re: PV suffer, have troubling eye problem?

Hi again.I am retired for almost 3 years.I see my hem every 2 months have not had any blood taken off in 3 years and like U;wake up tired.I was diagnosed by bone marrow biopsy.I just live day to day by the Good Lord's Blessings!I have a friend (Joanne/Cangal) who was diagnosed last year.We keep up with each other on a regular bases.She has been tremendous support for me and a super new friend.I f i can help U in way of support and encourgement;I'll be glad to do so.
God Bless;
Randy

 
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