JAK2 Mutation - Effects and Questions

Since you mentioned ET and the VA in one sentence may I ask if you were ever stationed at Camp LeJeune. NC? If yes, we can have a conversation at the contaminated water at that military base and the fact that the toxins in that water cause MPN and MDS blood cancers as well as other cancers.

I was told i had Central Vestibular Vertigo by the best ENT in South Carolina, I got a look at my CBC and told my Doctor (PCP) I have some type of cancer and it turned out to be ET, I'm a master electrician, not a Doctor. That's the VA for you.

We may be on to something. I have blamed it on my COPD, however I don't need daytime oxygen. But I sound like both of you and go to bed by 6:00, just to rest. It is nice to know that it could be not in our head. I hate being lazy. lol

After reading that so many JAK2 people experience being weak or tired, and have balance issues, now I wonder if I can attribute my similar symptoms to the disorder. I tell people that my balance issue can be described as having been on a cheap drunk without having the pleasure. And I now tire easily. So now I’ll discuss this with my hematologist next week.

Hi Barbie......I have jak2.....myeloproliferative neoplasm, I believe it is similar to pv. Chronic fatigue most of the time, poor balance and occasional nausea. When I feel weak I try to rest often and for at least two hours at a time. I usually go to bed by 6 o'clock just to relax and watch tv

I'm happy to share my experience. #1. No, do not need to give blood. The Hydrea is toxic enough to kill the excess platelets. #2. I have experimented over the years to cut back a little from the prescribed dosage simply to minimize the amount of toxicity I'm consuming. My Docs have not liked this kind of fooling around with the dosage. So I've been steady at 6 days a week, no Sundays for about a year. No side effects from the Hydrea after the initial first month twenty years ago. #3. I still have no symptoms of this strange blood disorder called ET, regardless what my count is on any given day. I go every 3 months for a cbc. It puzzles me that at 72, I still feel the same with a count of 480 as I did at age 40 when I was diagnosed with a count of 800. #4. My two Docs (first one retired) have dangled the ultimate fear over me since the diagnosis, but so far my ET has not morphed into leukemia. Having no symptoms and in disbelief, I went to the Scottsdale Mayo Clinic for a second opinion at some point in the 1990s. Same diagnosis. Very disappointing because I was really convinced that nothing was wrong with me. Thanks for sharing the NIH info. I always like to run across updated information on PV,ET, and other blood disorders. You may never progress to anything more advanced. Best wishes.

Even though you take hydrea six days, do you still
have symptoms of PV? If so, what are your symptoms and how do you handle them?

I am Jak2 and this was diagnosed after 2 mild strokes in which I experienced numbness in my left hand, inside my left cheek and tingling of my left foot. Both strokes occurred in the sa.e week. My platelet count was very high and my BP shot up well over 250. I am 75 and otherwise very healthy. I am on aspirin, hydrea, and bp meds and doing fine but am extremely tired most of the time. How do you all handle the fatique?
.

Hi Barbie 75....I also have jak2 and take 500mg Hyderabad six days a week. I still have extreme fatigue so I just take the time to put my feet up and rest my body or get right into bed. This seems to work. Mornings are the best part of my day but by noon I feel weak. Good luck