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I have JAK2 ET and MPN: Anyone else have these symptoms?
Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (49)Comment receiving replies
I was diagnosed with ET and I do have the Jak 2 mutation. Leading up to my diagnosis I had elevated platelets and absolute lymphocytes for approx 2 yrs with my referral being “overlooked” multiple times. I had been having mild to moderate headaches daily, extreme fatigue, nausea, dizziness, chest pains, palpitations, pain in my hips and down right leg. I had additional bloodwork done, abdominal ultrasound, and bone scan. The bloodwork is how they found the Jak2 mutation, bone scan was normal, ultrasound showed some lacerations on kidneys, but doc said that was no concern. He cancelled the bone marrow biopsy, told me he wasn’t going to treat me for now and to take a low dose aspirin daily. I’m wondering if I should get a second opinion. I just turned 46, have 6 children, a wonderful husband and want to enjoy as much life as possible without all the side effects. I won’t let them stop me though, we have started a workout routine again and I try to do as much active stuff with the kids as I can! Since starting the aspirin, I have had an increase in the headaches, and almost constant ringing in my ears.
Replies to "I was diagnosed with ET and I do have the Jak 2 mutation. Leading up to..."
Please look for my reply to you. I did not hit reply so it was just added. I signed it Eileen.
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Eileen
I do not have ET but I do have PV. Your ET is one of the three Philadelphia chromosome-negative Myeloproliferative Neoplasms, ET, PV, and MF. I just call mine PV for short. I was diagnosed with PV after having a very high platelet count during a doctor's visit. After having the most detailed blood testing of my life, I was diagnosed with PV with the Jak 2 mutation. I thought with a genetic mutation I would have superpowers like Spiderman but those abilities never arrived. I have been taking Hydroxurea twice a day at 500mg. along with baby aspirin. Four years later and this PV has not had much of an effect on me. I have fatigue late in the afternoon and at night so I do all my important activities in the mornings. I go to my gymnasium 3 times a week and stay active. I think this helps immensely. I too have ringing in the ear but I am sure that was from my field artillery days in the army. Other than getting tired at night, I have little if any pesky symptoms to slow me down. I wish you the best,
James, 63 and enjoying life to the fullest
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Welcome @emcobb76. To help you connect with others who have essential thrombocythemia (ET), I moved your post to this existing discussion.
- I have JAK2 ET and MPN: Anyone else have these symptoms? https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/
You may also find these related discussion to be helpful:
- JAK2 Mutation, Low Iron and High Platelet count https://connect.mayoclinic.org/discussion/jak-2-mutation-and-high-platelet-count/
- JAK2 Mutation - Effects and Questions https://connect.mayoclinic.org/discussion/jak2-mutation-effects-and-questions/
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
Here you can connect with members like @claire39 @bluegrasspv2018 @jam5 @dwlowrance @markdi @stevehurlburt @anno @eileen11108 @garyinmo @hariom1961 @cajunqueen, who have the JAK2 gene and essential thrombocytosis (ET).
@emcobb76, I love your attitude and your determination. Are you considering a second opinion at Mayo Clinic?