I would love an mpn buddy!

[Sarahjane100]

Hello. I am waiting to be properly diagnosed with ET. I am jak2 negative and waiting on results for other general tests. I have an appointment with my heamotoligist in 2 weeks, I think he will organise a bone marrow biopsy. I hate this not really knowing anything for certain and would appreciate someone to talk to.

[Mazcd Partner MPNVoice]

Hi SarahJane, can you email me at [e-mail] and I can send you the details for getting a buddy. Best wishes, Maz

[Sarahjane100 in reply to Mazcd]

Hello Maz. This is sarahjane100. I've just seen my heamotoligist, and still no real conclusion! I did see someone different this time, a lady heamotoligist, who was very nice. She told me I am triple negative for the genetic testing, and she wouldn't recommend a bone marrow biopsy right now because my platelet count of 594 is not high enough and I have had no symptoms, apart from itching a lot! So I have another appointment in July, more blood tests to see if platelet count rises. I did ask if she thought it was ET, and she said it could well be. So still just a wait and see. Hope you are well, best wishes, sarahjane.

[Ramy22]

I am a buddy.... Maz might send you my details!!! Always happy to help!

[Roger41]

Good morning Sarah, welcome to this web site

We are hereto help you find your safe space to explore your options and move forward.

Each one of us are unique, the waiting is the hardest thing to do as perhaps you may feel as though you are in limbo?

This is can make you feel as though you are totally alone.

We are here to make sure you can get the right information that helps you.

Max is excellent. She can send you what leaflets you need.

Good luck and keep posting.

[socrates_8]

Hey Sarah Jane

Stay calm & try to be patient. Many of us have experienced being where you are right at this moment.

The very best space I have found since my diagnosis in May 2016, is MPN Voice.

Everyone here is empathetic and tries their best to assist wherever they are able. Talking & listening to their experiences, for me, was an epiphany, & really helped me personally come to terms w/ my MPN condition.

Maz is super as mentioned above, & no doubt she will help steer you toward what is you need.

Best wishes

Steven

(Sydney)

[clevemic]

Hi Sarahjane100. When I was first diagnosed with PV, two years ago, I also felt that I needed someone to be my "MPN Buddy". I got connected with Imerman Angels, an organization in the US that matches cancer patients with mentors that have the same disease, are the same gender, are similar in age, etc. I began as the one needing support, and have since moved on to being the person providing support. About a month ago, I was partnered with a person who was recently diagnosed, so I've experienced Imerman from both perspectives. Great program! If you are in the US, and if you want more information, feel free to contact me.