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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Dec 18, 2023 | Replies (273)

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@barbie75

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?
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Replies to "I am Jak2 and this was diagnosed after 2 mild strokes in which I experienced numbness..."

I don’t get overly fatigued but the Hydea does give me an upset stomach that lasts for 30 minutes or so. I force myself to go to the gym for 60 minutes 4 times per week. My MDS/MPN is currently under control but I also have 4 leaky heart valves. Two minor and two mild-to-moderate. I get an echo every six months to check on those leaks. My blood cancers were most likely caused by exposure to toxins at Camp Lejeune, NC as the drinking water there has been contaminated since 1954. I was also exposed to dioxin (Agent Orange) in Vietnam. I assume the same toxins that caused my blood cancers may be responsible for the damage to my heart valves. Guess I’ll never really know. I also share something you have. I have neuropathy of both my feet. I was diagnosed with HSN Type 1 years ago. HSN is hereditary neuropathy which runs rampant in my family. Comes down on the X chromosome so thank you mom and grandma. I do get fatigued but I know I have to keep moving. I don’t have high BP so I can’t offer you any advice on that. I assume your doctor will tell you to excercise, excercise, watch your weight and watch your diet. Good luck with your treatments

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

I am tired some in the morning but otherwise once I get going I’m ok. I wonder if it is your BP meds making you tired? How’s your diet? Do you take any supplements?