Splenomegaly

Hello all. After several years of being misdiagnosed with Costochondritis, my GP recently discovered that I have an enlarged spleen and iron deficiency anemia.

My abdomen is very uncomfortable and feels as if it’s being pinched and punched at times. The pain has significantly increased in the past few days. I’m also having pain in my left shoulder and kidney. Slight movement is all it takes anymore.

This Friday I’m having an MRI of my spleen and am nervous about what my results could be. Initial CBC and WBC were “normal”. I’m here to educate myself and support others. Thank you in advance!

[Mazcd Partner MPNVoice]

Hi LB515, completely understand that you are feeling nervous about the results, but once you have the result and a definitive diagnosis you will be able to move forward. Let us know how you get on and good luck. Best wishes, Maz

[Hidden in reply to Mazcd]

Hi Mazcd, I appreciate your response. I plan on updating once I have the results. Thank you!

[socrates_8]

Hi LB515...

It is a pet hate of mine... 'misdiagnosis' I mean...

I went for many years before my MF was properly diagnosed, and suffered from two TIAs (minor brain strokes), before things finally became better known etc... And all of that was by accident too...

That is one of the myriad of reasons why I am running a Fundraiser to cycle around Australia, 20,000kms in Under 200 Days... Well at least that is the challenge...

Hopefully, you will receive the treatment and medication that you require to have everything settle down for you with your spleen etc... Because I too understand how painful and uncomfortable that can be...

Best wishes...

Steven

(Sydney)

PS. WWW.MPN-MATE.COM - mpn-mate.com/sponsors/

[Hidden in reply to socrates_8]

Hi Socrates_8, I appreciate your response. It must have been very frustrating waiting for your results. I'm sorry you had to suffer through everything.

Good luck on your Fundraiser and what a great way to bring attention to your cause!

[Wyebird]

What ever the result I wish you well. I was told by my heamo that mpn ET doesn’t always mean high platelets.

[Hidden in reply to Wyebird]

Wyebird, thank you for the well wishes. It has been a long process. I also have chronic EBV and am nervous. Tomorrow morning I'll have an MRI on my spleen. Once results are I guess we'll go from there. I need to see a Hematologist.

I hope you're well.

[Wyebird]

I’ve just researched Ebv. Hopefully the MRI scan and a heamo visit will answer a lot of questions and will give you a true diagnosis. Keep us informed.

X

[Hidden in reply to Wyebird]

Thank you so much. Will definitely update once I have some answers.

[Joprv]

Hi, understandably you are nervous. I feel for you as my spleen is a monster and has a mind of its own. Can I please make one suggestion to you; be sure to ask your Doctor if your portal vein is clear. I never did that (I had no idea about that) and my original Doc was not across the MPN world at all. If they had of checked that as well it would have saved me a year of pain and suffering and now the ongoing challenges.

I have learnt to become very assertive with my team of professionals and they really appreciate it as I keep all of my own results and reports do my own research and ask many questions. Wishing you all the best for your tests.