Hi everyone
I am 42 years old and since August 2016 I was sent by my boss for a rule out of lymphoma. I had a rash in my dx Leukocytoclastic vasculitis and wasn’t shocked really. At age 19 I had a rash and 6 years later diagnosed with PLEVA ( rare) not much really known and a dermatologist can go a whole career and never see it. ( everything I have is on NORD) it’s basically an autoimmune reaction that ( they say) can be just limited to skin but also systemic ( but no one gets told that ) I learned to be my own advocate and educate myself as a teen. I have been in the medical field over 20 years. also a history of RA per two whole test results one a 15 the other was 19. FFW to now!!! I have some alien rare and much scarier than a damn rash. HAS ANYONE HAD ANY EXPERIENCES WITH ANY GENETIC MUTATIONS? I finally went to moffitt to an MPN specialist bc no one knows a damn thing about it. I had once oncologist ( as was getting tested) and he acted like the mutation was bronchitis and told me
‘ you don’t have a blood cancer
‘ UMMMM did he even read about MPL? So I came home today and went on the patient portal and was expecting to just see leukocytosis and my labs and I see MDS , LOW GRADE ( CONFIRMED) BUT HE NEVER EVEN VERBALLY MENTIONED IT. He is a great and smart DR and since I have worked alongside many drs I knew exactly how the day would go…and ultimately get more tests and I knew they would want their own BMB bc lets face it that hematopathologist is who actually diagnosis you. So, ok I say he is gonna do the BMB and then boom MYelofibrosis and it’s still going to go that way or AML. So, I wasn’t shocked at what I saw per say..i was shocked bc he never even mentioned it and I am waiting on new insurance and they have a pre existing deal. So yay me!!! I want expecting MDS and in reality its a ” pre stage” to MPNS and 30% AML so its the same damn thing really. I have found one yes I said ONE person with this MPL and there are lots of forums and groups and just wondering id anyone knows anyone or ever heard of it and any advice is welcome. Sorry this is long.. but I am on NORD and everything is rare and I think I may be alien. LOL
Thank you,
Kristy
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