Recently officially, diagnosed with ET but have reason to believe diagnosis is about 4 years remiss.
Three months ago I was diagnosis with both an autoimmune disorder ( mixed connective tissue disorder) and a MPN.
I am happy to have a better understanding of what the past years of constant discomfort has been all about. Looking forward to some relief and healing with proper educated.
Hi Erin
There is some research that links autoimmune disorders, chronic inflammation and myeloproliferative neoplasms. Due to the idiopathic and asymptomatic nature of MPNs many of us had the condition diagnosed following blood results for other conditions. Can I ask what your platelet count was on diagnosis and what you take to manage the condition? I am sorry to hear about your mixed connective tissue disorder. I had polymyositis when I was 28 years old. It has been indolent since then but now at 57 I have Essential Thrombocytosis Jak2 positive. I have had it for many years but only diagnosed following BMB in 2012. I hope you are feeling well.
Regards
Anna
Some splice knowing what has been going on. It took me two years to figure it out, not the docs and even understanding it myself couldn’t get a doctor in Kansas City to comprehend that each new symptom was due to MP!! ET!! Healing?!?! Seems like one symptom after another so never feel like get a heal break. Not trying to discourage you but accepting this ET condition and how it’s trying to kill you puts you ahead. Brace yourself
