New to this site looking to chat

[Sunnye]

Hi Everyone!

I'm hoping to connect with people who can relate to what I'm going through as all of you know the JAK2 v617f gene mutation is RARE (which I have like some of ya'll) also I have ET & stage 1 Myleofibrous not to mention chronic pain due to 3 spinal surgeries which is how I found out about all this in the first place I was diagnosed at 38 ...I'm overwhelmed because all I know to do is hope to chat with some of you because ET symptoms mimic some other medical disorders sometimes I feel like I'm going 🍌 bananas!!!!! I was having UTI symptoms with a lot of extra fatigue went to doc no UTI I'm glad he ordered blood work to check my counts . Do any of you sweat excessively? Also I've noticed soreness in my left rib area which must be due to my spleen being swollen this is new it's been going on the last few days it concerns me since it just started. I am on medications for other things so far no ET meds it's just been being monitored by my blood work . My oncologist doesn't seem to be to familiar with ET ; I've been checking around for different doctors. I'm glad to have found this site ! Thank you to anyone whom reads this I'll really appreciate any advice anyone offers! Sending well wishes!

[SunnyY]

Hi Sunnye, from SunnyY!

I've been newly diagnosed and in some ways that's been a good thing, I was starting to think I was a bit of a hypochondriac!

Hope you find the answers you're looking for from this site

Sunny

[jane13]

Think u want a haematologist not an oncologist!

[francesb]

Hi Sunnye, I'm sure you'll find loads of helpful information here and on the MPNVOice website. I don't know where you live but would recommend you search for an MPn specialist, your haematologist should be able to refer you. Many doctors seem to know nothing or very little about MPNs. We all seem to have slightly different diagnoses but many similar symptoms, fatigue being a major one. The sweating too, hot and sweaty then cold is how I get it. Your haematologist should examine your spleen if your counts are high, very simple and takes a few seconds. If they are in any doubt a CT scan can show the exact situation. Good luck and keep coming back here, best wishes, Francesb.

[MariaB27]

I haven't any advice to give as I have just recently been diagnosed but I too find this site very helpful and really appreciate everyone who replies. All these comments help to understand the symptoms and what we should be asking. IBest wishes for your journey ahead.

[Mazcd Partner MPNVoice]

Hi Sunnye, welcome to our forum, you will find that the lovely people on this forum will be able to offer lots of help and support to you, just ask any questions you have and we will do our best to answer them. Best wishes, Maz