I have ET, JAK 2 negative. I've been having twinges under my left ribs for a while, when I mentioned this to my GP he said it was probably "rebound" pain from my gall stones. However it has gradually increased and now I can "feel" something pressing under my lower left ribs. It is not particularly painful I just know it's there. I'm hoping to see my GP tomorrow. I haven't had any examinations around my spleen since I was first diagnosed a few years ago. I know it could be something else but I'm hoping not anything nasty! I haven't had any other sort of symptoms.
I've been on HU for over 2 years, I take 2 x 500 mg Monday to Friday and 3 x 500 mg on Saturdays and Sundays, plus a daily aspirin.
For a few months I was anaemic but my last blood test was ok on that score.
Any ideas on what I should be asking the GP? Should I request a scan and should I be getting in touch with the haematologist? My GP doesn't seem to know anything about ET.
Thank you in advance!
Lizzie
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lizzziep
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I would contact your haematologist, he/she can arrange for you to be examined and if they feel something arrange an US scan.
I wouldnt ask at the GP's. Although my diagnosis was only 2 years ago i am certain i have had this for 10 years or so. I felt somehting myself like you have which grew and became very evident from touch down my left side going right down beyond my belly button. I asked at the doctors and was examined by two nurses who said it was muscle tone and nothing to worry about - so get it looked at by those who know.
You may find its nothing, i do myself find myself analysing every twinge, pain now...hopefully you will find its nothing, but even if they do at least they then know about it.
Hi Lizzy ..you need an ultrasound scan ..it's simple and quick ..it will confirm or settle your worries ,,ask your haematologist ,,right away ,,don't you fret ,,, twinkly. Xx
I had an enlarged spleen when first diagnosed in 2012 and experienced nausea and very poor appetite with it as well as pain. However it was less to do directly with my ET but my portal vein thrombosis and ascites I had. Since that was dealt with It's been back to normal size and not had any more problems with it but as Paul said I too still find my self analysing every twinge I get these days. Recently had a pain under left rib, felt bit nauseous but turned out it was nothing to do with spleen probably just growing older pains and nausea just caused by me worrying.
I would just as others have said speak to your haem and get it checked out, it may be nothing, but best be on safe side and it will stop you wondering about it. hope you get on all right. Lizxx
Hi Lizzie, as per the replies below, you need to speak to your haematologist about this, but you could also speak to the GP to explain your concerns about your spleen as an enlarged spleen is a symptom of MPNs. Good luck, Maz
I've seen my GP this morning. He couldn't feel anything untoward with my spleen - or anything else! However he is arranging a scan, with the report to go to himself and the haematologist.
Just read thru Lizzie's thread here and thought to myself 'how wonderful'!! Here she was, unsure what to do, seeking a little advice & support and bingo! everyone comes up trumps again! I believe you can then make an informed decision about what to do next once you get the input from all our knowledgeable MPNrs out there. I just suddenly felt very grateful for this support network and I'm sure Lizzie did too. Much love, Poll x
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