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MEJ Thrombocythaemia - Internet forum dedicated to Thrombocythemia
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2007 Thrombocythaemia Forum Archive
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Re: New member
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zydee
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Sep 15 07 10:56 PM
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HI Mark,
Welcome to this site. I found just knowing that others have similar problems with this condition and I could talk about it with others understanding made it so much easier for me to cope.
Although I knew my platelet level was raised averaging 600 for two years my hem recommended just monitoring my levels as he thought I had reactive thrombocytosis. For months my platelet level even dropped to the 450 range but it was just after that when I got a portal vein thrombosis which has caused my spleen to enlarge to 19 cms. Only diagnosed in June 2007 I was prescribed 100mg aspirin/day to thin blood. My constant migraines[averaging 2/week]stopped. Old CBC results showed my platelets were high 5 years ago 452 and I didn't know. I was also depressed a lot and didnt know how I was going to face a lifetime feeling as bad as I did.
I am now on my 5th week HU[platelets436 this week]500mg every 2nd day.
I feel fantastic,my head feels clear,vision has improved,energy levels up getting better each week as thelplatelets have dropped.I am happy. I have no noticable side effects from HU although I had some initially such as mild headache and aches and pains and tiredness.[I drink at least 12 glasses water /day which I think helps] MY friends say I look really well as they associate chemo with hair loss etc.and I looked very tired and stressed before.
As a very reluctant taker of both aspirin and HU I feel relieved and don't worry any more about having another blockage and other things that can go wrong.
I had to sell my business when the migraines started 5 years ago and now I am thinking about starting another business. I will give myself more time to adjust to my new situation first.
As far as your stomach pains go you might need to see a gastrologist and have a gastroscopy.I have had 2 in the last 8 months.Didn't have to even take my clothes off and I didn't feel anything as I had a sedative. Please tell your doctor about your stomach pains as you are taking aspirin. Enteric coated aspirin are an option. I had a physical cause that contributed to a lot of my problems over the last few years, and what you have got won't be helping how you feel.
Believe it, things CAN get better. Good luck Mark,
thinking of you,
Elizabeth 52yrs
.
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