Newly diagnosed

[Wendykim58]

Recently diagnosed with essential thrombocythemia and have been put on Asprin! I am having dizzy spells , muscle pain, shock like pain which attacks different parts of my body, headaches most days, just wondering if all these symptoms are related to my condition ? I also seem to be thirsty most of the day!

[AndyT]

Hi Wendykim - welcome to the club..! It's always a worrying time when first diagnosed but ET isn't as scary as it sounds and 13 years on I've definitely learned to live with it - make sure you find a good haem who understands this condition and takes time to understand you and your needs as we are all different. I'm lucky not to have had many symptoms or side effects from treatment and try to avoid assuming that everything is because of my ET. This forum is a great source of support and advice from others who also have ET and the MPN Voice website is a wonderful source of information so do take time to look at that too.

[lizzziep]

Hi there. I also have ET, diagnosed a few years ago. I was just on aspirin at first but went on Hydroxycarbamide after my platelets went over 1000. I was never sure (and am still not) whether any feelings of ill healthor pain were from the ET or the drug or just aches and pains. I sometimes get night sweats, pain from the spleen area, I too occasionally feel dizzy and quite hot, that doesn't last long though. It's a bit scary when you're first diagnosed but most of the time you don't know you've got it! 😄😄

Mine was found via a routine blood test. It was even more scary when l went on HU but I'm used to it now.

If you have any questions about your condition or treatment there will probably be someone on here who can answer you.

By the way I haven't suffered from thirst, I don't know about anyone else. That can be a sign of diabetes so keep an eye on that!

Best wishes

Lizzie x

[catkinspolymer]

Hi Wendy Kim,

those symptoms appear to me as if your platelets are still too high . I had all of those in 1996 but they diminished pretty well to zero as the platelets were brought down with hydroxy carbamide (HU/HC) and baby aspirin. Still here some 20 years later and enjoying life.

I have to endorse what the others have said about a good haem who has dealt with ET before. Might be worth a trip to see a top specialist.

oyez oyez

Town Crier

[Eadaoin]

I was diagnosed in 1998 with ET. Put on Aspirin. I remember thinking then that every ache, pain and occasional dizziness was caused by the ET. Not true, there were other causes. I do think ET can affect tiredness levels but then there are also other contributing factors to that too - age, busyness, the stresses of life etc. I suggest you look for other possible reasons for the symptoms first before putting them down to ET or Aspirin. I do understand your worry and the shock you have received with the diagnosis but trust your Haematologist who hopefully is up to date with MPNs. Hope all goes well for you.

[Karol_Rua]

Hi Wendykim,

Diagnosed with ET 14 years ago and on aspirin firstly. Had NO symptoms bar extreme fatigue. I had the odd headache which I put down to 'general stuff' so maybe its worth checking all these symptoms out with your GP, haematologist, or even pharmacist?!

I have severe thirst now since I was prescribed hydroxyurea but this is to be expected from this medication - not from ET (for me anyway).

Mind yourself, stay hydrated and mention these symptoms to a health professional - they sound too extreme to go unchecked.

Karol

[Wendykim58 in reply to Karol_Rua]

Thank you for your comments ! I am so grateful to receive any experiences other people have had ! This is a great place to learn about ET, and any little thing I can learn about it is most welcoming . Best wishes

[Mazcd Partner MPNVoice]

Hello WendyKim, welcome to our forum. It is quite a lot to get your head around, trying to find out what the ET is and how it will affect you etc, I would say to read as much as you can on our website about it, if you would like me to send you any of our information books then please send your address via email [e-mail]. With regards to the symptoms you are experiencing, I would talk to your GP or haematologist if you are due to be seen fairly soon in clinic, especially being thirsty most of the day, it is important to stay hydrated when you have a MPN, but being thirsty may be due to something else rather than a symptom of your MPN. Fatigue, night sweats, bone pain, itching, fevers, spleen pain and sometimes weight loss, dizziness, headaches or visual disturbances or silent migraines, leg pains, are all common symptoms of ET, but do tell your GP and haematologist exactly what you are experiencing as it is sometimes too easy to put symptoms down to having a MPN or medication, it is always best to get checked out. Best wishes, Maz.

[Wendykim58 in reply to Mazcd]

Thank you so much for all your advice and welcoming me to this forum! I am very grateful and it has answered a lot if questions! Best wishes x

[Davide1984]

Hi from Italy!

I am 31, diagnosed with ET two years ago, jak negative. I'm on aspirin, blood check every three months.

I have no symptoms at the moment, but I read a lot of information about ET and sometimes I think that every pain is related to it...it's a mistake! Everyone has problems and pain, we are more nervous because of the anxiety! But we have to be hopeful! Trust your hema, it is better to avoid going everyday to hospital...there are very few doctors who know ET, so they are not really able to help us..be strong and have faith!

Davide Simeone,

Milan, Italy

[Wendykim58 in reply to Davide1984]

Thank you David! I only go to the hospital for routine appointments! I am nearly 58 and work in a hospital and have been very fortunate with my health! Have felt pooy for over a year now but when I went to see the GP I felt as if I was wasting their time . I now wish I had persisted, as it took me nearly collapsing at work for someone taking me seriously! I now know what's wrong and trying to find out if the symptoms are all related to ET.

[Cdseiter]

Thirsty - yes, dizzy - yes, muscle pain - yes.....dunno what you mean about "shock like" pain but strange pains seem to come and go with us types. Given your recent diagnosis...allow yourself time to adjust to it all. When you feel good, do stuff at 85% power....good times will come again as will the not so good. You will learn to adjust. Good luck.