MPD

[Ethicalthinker]

Hello dear friends,

I'm suffering from Neuropathy and

Polycythemia( Not sure about type)

My Jak2 was -ve so doctor not said for another test still.

My doctor check my condition and my CBC test and my HB,WBC,RBC,HCT was not normal and he advice me to waste my blood because my HB was 18.8 and i do it almost 7 bottels of blood (420ML) was wasted by me and then i feel relax because my HB and other things count normal but after one month my blood and WBC,RBC again is increasing and i'm feeling the same side effects in which the major side effect is difficulty in breathing due to thickness of blood i'm using medicine for blood not to thick but i'm feeling again the same side effects please anyone here can tell me what the issue is this and the Jak2 is enough or any other test can be helpful to know the problem ? Note:My RBC,WBC is counting high again

Waiting for your kind replies

[Alexbits]

Hi there, It's very unusual to have PV without JAK2 mutation, but still possible as far as I know. The next step is to perform BMB to check what's going on with bone marrow.

What are your blood counts when they are not normal and what type of neuropathy you have?

[Mazcd Partner MPNVoice in reply to Alexbits]

about 97% of people who have PV have the JAK2 mutation.

[Alexbits in reply to Mazcd]

Sorry, made a typo, I meant "unusual", not "usual"

[Ethicalthinker in reply to Mazcd]

May be! But my doctor said you can have a pv without jak2 mutation he said some peoples have PV also in JAK2 -ve result !

[Ethicalthinker in reply to Alexbits]

RBC, WBC always counts high in every report RBC,WBC counts 2 points high then normal value even after wasting 7 bottles of blood and i have a polyneuropathy and i'm not able to walk my hands are also effected with this

[Alexbits in reply to Ethicalthinker]

I'm sorry to hear that. What are the doctors saying? Did they suggest to do a biopsy? Do you get pain with your neuropathy, or only numbness and weakness?

[Ethicalthinker in reply to Alexbits]

I do not have any kind of pain but day by day i'm getting down i can not even walk a step now and in winter my hands effected badly as compared to summer

I have done with stirides, plasma exchange, IVIG injections but i am still not getting better

[Ethicalthinker in reply to Ethicalthinker]

Doctors said may be your neuropathy is converting into other neuropathy which will effect your organs thats why you have a breathing issues and not due to PV

[Mazcd Partner MPNVoice]

Hello Ethicalthinker, it would be best if you speak to your doctor again to ask him to tell you which Polycythaemia he thinks you have, either primary or secondary and why he has said you don't need any further tests. Best wishes, Maz

[Ethicalthinker in reply to Mazcd]

He said we will perform Jak2 again and may be a bone marrow test also because i have a breathing issues and my blood tests always shows count high

Thanks you for replies

[Mazcd Partner MPNVoice in reply to Ethicalthinker]

well that's good, at least you will know. Maz