Seems like I belong here, at last??: After more... - MPN Voice

MPN Voice

10,784 members14,980 posts

Seems like I belong here, at last??

Bittebitt profile image
5 Replies

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.

Written by
Bittebitt profile image
Bittebitt
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Mwalimu profile image
Mwalimu

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

mhos61 profile image
mhos61

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.

Mary

jillydabrat profile image
jillydabrat

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

Bittebitt profile image
Bittebitt in reply to jillydabrat

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😊👍

harleydavidson profile image
harleydavidson

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

Not what you're looking for?

You may also like...

ET with CALR+ type 2

Hi Fellows, I am 29 years old and I have been diagnosed recently with ET, CALR+. It was a really...

Hydroxy/seems to make me go into v deep sleep problem last night I was almost sleep walking

Hi everyone;: I'm on hydroxy the 500 1 pill a day I take at night. I've been on it for about a year...

How is your MPD managed and what are your experiences at the hospital/ check ups?

Hi, I was diagnosed with PV in January of this year when I was 38 weeks pregnant, my diagnosis...

A worried Mum’s need to know...

Hi, In April this year, my son was finally admitted to hospital in a critical condition and...

US Senator Joe Lieberman died from MF

Just read this in Wall St Journal. Reproduced below from:...