Essential Thrombocytosis

Hello, I  know exactly how you feel. I  am only 33 and  I feel so alone and scared of this diease. I am hoping that My Et does not turn into anything else.

dont be scared.. lot of new things going on in the horizon... just go to a real specialist ... like at mayo in minn.. etc..i am doing great .. on hydrea and aspirin.. take vitamins ... sleep good and the younger people do better.. may have probs after 60.... but you will live along time with the disorder and chance are it will not progress.. also are you jak2 tested yet

 

 

Thank you so much! I really needed to hear that. I feel so alone. I am a single parent of a 13 year old son and I can't imagine not being here to see him grow up. I was first diagnosed with the disease in 2002 and my platelet count has been running from 600-750 range. I checked my records as far back as 1998 and according to my blood test my platelets have been high since then, so i have ordered my medical records from 1993 when I had my son early. He was premature. I had him at six months pregnant and he weighed 1lb and 6oz, so am thinking maybe I had early because I had this disorder then and didn't know it. From what I understand this disorder causes premature labor. So I shall see. I what to know how long I have actually had this disorder. Right now I have stop taking the agy medicine because it was causing too many symptoms, so right now am trying baby asprin to see what it will do, not to mention that I have high cholesterol. Anyway you mention a test a ja something test. What type of test is that and what will it determine. Thanks again for replying. I feel sad and alone and I feel like no one understands,not to mention the crying spells at work. I am so happy you responded back.

.

.

It is rare that I see someone your age on here with the same disease my husband was diagnosed with at 34. He has been on Hydrea for almost two years and is doing well. His hem tells him all the time that he has seen people live into their 90's with this disorder. I won't lie to you, my husband does complain that he is tired everyday, but it helps him to have the family around him, as well as his job to go to everyday to keep his mind off things. I do all of the research for him and everything I read is very positive now...new things about ET are being discovered all the time. Hang in there and stay positive. The Jak 2 test you mentioned before is a blood test that they find some people with MPD to have. You can find lots of information on the MPD-Net digest. I just became a member of that sight and they answer several questions from thousands of patients just like you and my husband.

I was diagnosed with ET about 3yrs ago . I am on an asprin a day for now. My platelet count runs between 700 and 750 but my dr. has not put me on anything else. I stay tired all the time and seem to keep colds and sickness alot longer than most . To be honest I realy dont feel well most of the time and I am not real consistant with my appointments because at this point all they are doing is bloodwork. I had bloodwork this past friday but havent got the results back yet my primary dr does my bloodwork for me and then faxes the results to my oncol. I havent seen my oncol in a little less than a yr . I just found out that I am going to have to have surgury and have my galdbladder out. This is the second surgury that I have had since my diagnosis of ET. I dont know if I should be worried or not .  

Thanks so much for your information. I really needed to hear that. Thanks for taking time to post some information on this board.

To suzieluwho,

I understand how you feel. I feel tired a lot and I get colds a lot too. Sometimes my feet burn. Right now am only taking asprin as well, because my count runs from 650-750 too. I also get dizzy after moving around too much like cleaning, for some reason when am cleaning, after a while i get dizzy and have to sit down. As far as your surgery is concern, I think you will be okay. just tell your doctor about the ET, I had foot surgery about 4 years ago and it went okay, so you should be okay. It's so nice to get support on this sight.

Thanks for the reply . I have to see my oncol on mon so hopefully I will get my referal to get the surgury done . I just feel funny sometimes I dont know when to worry and not to worry . I dont want to feel like I am over reacting but in the same time I dont want to under react either . I did get my count back and it was 678 so compared to most it is still low . So I feel somewhat good about that . Thanks for all the replies .  To top it all off think I am getting a cold or something UGH! LOL

SUZIELUWHO .... good luck with your surgery. I Believe you will be okay. please come back on line to let me know how your doing..

Hi there! yes, its the same as Essential Thrombocythemia, just another name for it.

I have it too. diagnoised 10yrs ago when i was 30. Didn't have any symptoms at all, maybe just visual disturbances and headaches. Platelet count ranging from 600-1500 per microlitre of blood. Doctor never put me on any meds because she told me i was young and didn't need too. I had a baby 17months ago at 39 yrs old, and 3 weeks after she was born i got a clot (pulmonary embolisim) in my lung that nearly killed me. Was placed on heparin injections and warfarin for 6 months. Now got another clot in the lung again, but got it in time. VQ test next week and will have to go on warfarin and stay on it for good. Bugga, not happy about that at all. My daughter nearly died after birth too. She was very small for gestational age. Her BGL, (blood glucose level) went down to 0.4, which is death. Because of my ET it affected the condition of my placenta and didn't work well so my daughter didn't grow well inside me. She had many sezures when she was born and was in neonatal intensive care for 8 weeks. She is completely fine now, a normal liitle girl with no problems at all. Thank God! No more babys for me!