Hi has anyone successfully got a diagnosis of autoimmune myelofibrosis? It appears that it is commonly missed and primary mf is diagnosed instead. Outcomes are much better though and treatment is different. It typically affects females under 40. I was 30 when diagnosed and told it was very unusual. People are also typically triple negative (which I am too). The last time I spoke to my consultant he said that there is no way to differentiate but from what I read in medical articles it seems you can tell from bloodwork.
Interested to hear from any who have experience in this area. Thanks.
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Bakerloo73
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I have never heard of this but I have only been hanging out here for 2 years. I am Jak2+ with diagnosed BMB of ET but have since changed or it’s been revealed to be PV. I like that you are searching and educating yourself. Thank you for sharing your findings. I am looking forward to reading the other comments. I hope you are doing well. 😎🌺
I only read about autoimmune Myelofibrosis the other day, I wondered if this is what my wife has, even though she is now 65, she was seen as a child for unexplained bruises, when the doctors in Shrewsbury thought she might have leukemia. She grew up tall and her rib cage flared a little around where her spleen was, as though it accommodated the spleen. Photos of her in bikinis aged around 40 show the outline of her spleen which was just under her ribs and below her sternum. From childhood until the age of 58 she never saw a doctor much again until she fell and burst her six times too large spleen at age 60 in France while out running. After the Splenectomy she was diagnosed with Myelofibrosis, but when her platelets are well controlled she feels quite fine, though recently she gets anemic, but only noticeable when Hgb is below 95. Her white cells are normally in the 35 to 40 range . Her consultant says she's an enigma.
I almost had the diagnosis of AIMF but sadly got a diagnosis of prefibrotic primary Myelofibrosis instead!
I’m 35 years old, with triple negative driver mutations. My diagnosis journey happened by chance a day before I was delivering my 3rd child. My Dr. asked me to run some blood work to check my iron levels as they were low, and they found my platelets at 1200.
After a year of checkups and trying to figure a diagnosis, my dr. Wrote a report that he’s leaning towards the AIMF diagnosis and my thrombocytosis was due to low iron and pregnancy.
My BMB had fibrosis 1 but he said this could be benign and would reverse with the autoimmune diagnosis. He wanted to run an NGS to confirm his diagnosis since I was triple negative , which revealed a mutation in a gene called SH2B3 thus he ruled out AIMF and decided on prefibrotic MF.
My platelets were within normal range one month before they spiked to the 1200 so I really don’t understand how such diagnosis was made and deep inside I feel I got misdiagnosed !
I was diagnosed in 2003 with a 'possibly autoimmune' in the letter but a lot happened since then and it didn't get followed up. It's only recently that I've started questioning again as my mf hasn't deteriorated in any way and I do have lots of other autoimmune things going on. I am also triple neg but the gene panel that was done didn't reveal any other mutations. My platelets are now within normal range but my WBC count is low. I wasn't able to persuade my doctor why it is important to me to have the right diagnosis when I don't need treatment. If it makes a difference to things like life insurance it will be important though!
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Myelofibrosis
