Seems like I belong here, at last??

After more than a year, I fell ill with pneumonia at theend of may 2015, the specialists tend to believe that I have cmml. During this whole year, I have undergone four bone marrow tests,two of them with biopsy. I had hoped to get an appointment with a specialst at Oslo University Hospital before the beginning of the summer, but in the beginning of last week, I recieved a letter with the date of apponintment set to july 21. Which happens to be my birthday, by the way😖. Nice birthday present, as the only treatment for this condition seems to be bmt(!). I feel quite well for the time being, but it's hard to keep my spirits up right now. During this year, I also got Polymyalgia, a rheumatic disorder with high esr and crp, and a rare condition in my left knee, localized pigmented villonodular synovitis. I n march, I had a hard seizure with convulsions and uncinsciousness, so I had to leave in my driving license for at least six months. At least, I hope that I will get a diagnosis when I have been to Oslo, for over a year of uncertainty is now more than I can bear.

5 Replies

  • It sounds as if you could do with a buddy - ask Maz. Hope you soon find some help. Mwalimu

  • Hi Bittebit, I can understand that your spirits are low at this time. I have been recently diagnosed with ET and I am so so glad that I have found MPN Voice. I am sure that you will get all the emotional support as well as all the knowledge of the MPNs that you need here. It sounds like you have had a very tough year. Half the battle for you is getting a diagnosis. Only then will you know what you're dealing with and commence the appropriate treatment.


  • Hope all goes well on the 21st. You are sure going through a lot of health issues all at once. Hope you can have a bright spot on your birthday, you deserve it. Best wishes, Jill

  • Thank you, jillydabrat. Fortunately, I feel much better than I did a couple of months ago, and my friends and family say that I look much better too. I hope that when I know for certain what is wrong with me, I will learn how to deal with it as good as possible. Being a member of a community like this, already gives me a lot of comfort😊👍

  • Uncertainty is the hardest, especially when you have so much else to contend with.

    I wish you well and good luck with your appointment and Happy birthday for July 21st.

    Mel x

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