I have posted a couple of times and found everyone very supportive. I'm a 55 yr old lady who has been under Haematolgy dept. for about a year. On 75mg asprin only.
The expectation is that I have Essential Thrombocythemia and although my platelets are relatively low 460 I have been quite symptomatic ie. Constant debilitating fatigue, weakness/ shaky and exhausted. Circulatory issues with very red hands and feet at times. I am now experiencing sharp, occasional pains at the side of my left thigh. I'm trying not to become overly worried, but obviously I'm a bit concerned re: possibility of clot. My leg is not red and doesn't appear hot at the site. I wonder if anyone has similar sharp pains and if this is symptomatic of ET.
I know a little bit of knowledge is dangerous and not everything relates to ET , but would welcome anyone's ideas.
I wish everyone well who is struggling with any of the MPN's as it's very scary on the beginning if this journey.
Maz ( Administrator) has been so very supportive and kind and I appreciate all the responses.
Many thanks all xx
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Hope2-Optimism
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Hi hope2-optimism,when did you have your bmb? Feel for you, the waiting is the worst, you are right to assume all symptoms are not down to et. I have problems with hands and feet but not the sharp pains you have been experiencing, i do get bone pain but it sounds different from yours. If you worried have you got the number for you hospital's cns? I wished i could offer you more advice but until you have a diagnosis i feel limited. Wishing you all the best.tina.x🤗
Many thanks for replying. That’s a good suggestion to ring up. I should have thought about that. It’s just that you don’t want to be a nuisance or over dramatic!! The BMB was enough excitement fir me. Had it last Tuesday. Still in discomfort but not requiring pain killers now. They were very kind at the hospital. Just feel a bit bruised and a bit sure on that side of my hip bone. Once there is a difinitivr idiagnosis I’m hoping that a treatment might be given - as really don’t want to cope with how I’m feeling.
You are not being a nuisance or being over dramatic,you are worried,it is to be expected. We all know what its like,did they say how long before the results,its normally around 4-6 weeks. Keep us informed. Sending hugs.tina.x🤗
Waiting for the BMB was a bad time for me too-it happened over the Christmas period, and we had builders around. Life was grim. Talking to people who understood what was happening helped.
Clots are one of the main things that cause problems with MPNs, so it might be that the time has come to reassess the baby aspirin and see if your haematologist or GP can consider one of the relatively new oral anticoagulants instead . I'd had a pulmonary embolism before I was diagnosed with myelofibrosis, so that meant that my clotting risk was being controlled anyway. I take one called rivaroxoban (Xarelto) - just one pill a day, and no need to keep having blood tests, as you had to do with the older anticoagulants like warfarin.
Talking things over with your cns is a good idea - they can help work out the best thing to do.
Thank you so much for your really. It was most welcome and informative. It's all a steep learning curve and I'm definitely out of my depth at the moment. I'm definitely going to compile a list of questions etc for my appointment. The CNS will most likely be my best port of call. I hope you are managing your illness as well as possible. Everyone seems to have such individual stories - even if they have the same diagnosis.
Many thanks again fir the info. I wish you all the best.
Hello, I just joined this site recently and I also found it very helpful. I wish I had found it years ago when I was first diagnosed 11 years ago. It would have explained a lot. I am ET and PV Jak2 positive. My platelets were over 600000 when I first got diagnosed. I was getting terrible headaches at the time and nothing was helping. As soon as I started my regiment of hydroxy, my headaches went away. My point is that once you have the correct diagnosis and get treated, you should start feeling better. I wish you all the best.
Thank you very much for your reply. It was most welcome. You managed to make me see that although I'm feeling pretty fed up with things, there will eventually be a diagnosis and hopefully a pathway forward with the correct treatment regime. It was very kind and helpful to receive your response and very much appreciated. This forum definitely helps you feel less isolated.
I wish you all the best with your future health too.
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