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  3. Polycythaemia Rubra Vera

Scared it still could ben pv.

Posted , 2 users are following.

Lorenzo1201
Lorenzo1201

male

24

begin january i went to the er for severe epigastric pain(esophagitis) and they drawn my blood and i had high rbc 6.26. so they send me to a hematologist.

next week i had my blood drawn again and my rbc was now 5.89. and the jack2 came back negative aswell. and she didnt do a bone marrow biopsy.

but since then i feel like i developed bone pain or muscle pain in both my shins. no other symptoms like redness and migraine like headaches. maybe a little abdominal discomfort but i think it may be because of the stomach flu because i have watery diahrea.

should i still push for a bone marrow biopsy if the symptomes dont go away in 1 or 2 weeks because i cant keep paying al these tests. also i take ppi for esophagitis.

0 likes, 2 replies

2 Replies

  • harrishill1
    harrishill1 Lorenzo1201

    Posted

    Lorenzo 1201 Hi Lorenzo. If you don't have the jac2 gene mutation, you still may have PV Rubra Vera. Did your hematologist diagnose it that way? If not, ask for a diagnosis. You do need to continue having the blood tests, so that the doctor knows if you need meds to lower the red blood count. I also didn't ask enough questions when I was first diagnosed. If it is Rubra Vera, the doctor shd be trying to determine what is causing it. Good luck, and best wishes. harrishill

    • Lorenzo1201
      Lorenzo1201 harrishill1

      Posted

      hi thank you for replying.

      i will do another blood test next week.

      she didnt do any further testing because i live with 2 heavy smokers. am slightly obese, have astmah and snore from time to time

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