Lilly1958: Hi my MPN friend, lot happening from my... - MPN Voice

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Lilly1958

Lilly1958
Lilly1958

Hi my MPN friend, lot happening from my last 3-4 month. I have Et for 26 years only on aspirin and platets was 400-500, but after holidej (long flight) my hct go up to 48 and put me on venosection for8 month , was bad and put me on interferon weakly (only 5 weaks) and my old hemo. Told me I have PV, witaut BMB. He sad no need Bmb.Now I have new hemo. And he did BMB , stop interferon , end only on aspirin agen.After 8 month venosection my hct is 36 , platets 400, and result from BMB is

"these finding are most in keeping with the stated Essential Thrombocythaemia (WHO ICD 9962/3).Reticulin staining is not increased Grade MF-0.Normal erythropoiesis and minor increase in pleomohic megalaryopoiesis." I have Over 20 years diagnosis Et, 8 month PV, and agen ET. My question is BMB report is ET , way I have before hight hct 48 in blood . Blood and BMB not same , and different dijagnoza of 2 different ham. Still waiting for blood test for Jak 2 and genetic test. From 7.3.2018.i drink 1000 mg curcumin and ginger with honey frst in the moning and NONI juice, 2 lemon 3 oranges with 2 litre herbal tea.I belive in alkaloid food and try have minimum 50% every day . Thanks good not MB , becouse I have MPN for 26 years. Maybe I am good for Sam experiment ..Any similar story?

4 Replies
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Hi Lilly,

I have ET too.

I have read that having the Jak2 mutation for ET can present with overlapping features of PV. My haematocrit at diagnosis was 47.9, yet I was still given a diagnosis of ET albeit, without a BMB. I was put on hydrea which brought my platelet and haematocrit levels down, so win win all round for me.

It sounds like you’re in excellent hands, and such an inspiration to us all having had ET for 26 years.

Mary x

Hello Lilly 1958, good to read your post . I was diagnosed with pv/et four years ago and have been on hydroxyurea since then which has brought the ppl at let’s down . Still have multiple problems though . I did have a bmb and have jak2. I am in central Victoria , but go to peter Mac hospital . Bye for now

Lilly1958
Lilly1958 in reply to Betbet2136

Hallo Betbet, long time I read and I think dr. Harrison said we are can't,have both , only can Et transver to PV , BMB selected Et or PV , blood test Jak2 , I had 3 times in 10years blood test and was always pozitiv, I thinking if I have ET (by BMB ) whay venosection , I think I have both . Diagnosis of ET now and venosection , I think only PV have venosection . Our MPN is really different person to person , Maz said same . Now I only must waitin for next resolt of blood test , and Hct , I houp venosection stopped . Thanks for replying . Lilly !

I am on the same road. I believe in alkaloide diet too.

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