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Anyone Taking Jakafi For ET Symptoms? If So, What Side Effects Have You Experienced?
Thank you for taking time to answer. Will have CBC in 2 wks so I'll see what's happening with my platelets.
How Necessary Is It To Commence Cryotherapy If You Don't Have Any Symptoms Of ET? Platelets Are Slightly Elevated But Not Excessive.
You never have to start cytoreduction for asymptomatic ET unless you believe it is in your best interests to do so. There is a risk stratification system in place for ET. I believe your profile… read more
For ET People, Do Lower Platelets Equal Fewer Symptoms, And Higher Platelets Equal More Symptoms?
Hi Patty
My platelets have been as high as 970 and as low as 490. No symptoms high or low.
All I will say I was very stressed our when they were 970.
Best wishes
Lyn
Hi All. I Have ET, Diagnosed 2 Yrs Ago. So Far Up Until 3 Weeks Ago No Symptoms. Now I’ve Been Having Intermittent Periods Of Lightheadednes
Analytical Research Lab in Phoenix does the Hair Mineral Analysis; for a detailed nutritional analysis.
Are Severe Headaches A Symptom Of ET?? I Can Not Get It To Go Away 😔
I have terrific headaches also. Tylenol does help, but Advil helps more. My Oncologist told me not to take NSAIDS. I guess because of blood clots!
I Have ET & Have Started To Get Breathless During The Day & Previously At Night Time But Also With A Heaviness In The Middle Of My Chest.
All tests do not sure anything, as gave had cr scan, etc, therefore wondering if this is a separate symptom or from ET. I am only on aspirin as under 60 & this seems to control my symptoms of stinging sensation in fingertips & stabbing sensation..
Thank you Eugene for this information & will look into further, much appreciate 🙂
Does Anyone Else Experience Internal/subjective Tremors?
Hi all, long time listener, first time caller here.
I was diagnosed with PMF about 6 months ago (CALR mutation, pre-fibrotic) but have strange internal tremor that occurs when I am at rest. It can be on any part of my body, arms, legs, torso, head - or a combination - and is mostly noticeable when I am at rest such as in bed or sitting quietly.
On occasion the tremors have woken me. My partner cannot feel the tremors and there has never been an externally visible manifestation. On other… read more
@A myMPNteam Member, do you think your tremors/vibrations are relate to your MPN or are they post viral?
Polycythemia: Memory Issues
Hi All,
I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.
Online reading has not indicated polycythemia as a reason for such memory trouble… read more
Wellbutrin is prescribed for depression and smoking cessation, but it is also used off-label for ADD/ADHD. So I take a small amount to fight the brain fog. It is working! It also helps fight my… read more
What Are Symptoms Of Median Myles Fibrosis
I Have Had Pain In Several Joints During 3 Months. Could It Be A Symptom Of MPN?
I have essential trombocytosis.
Thank you for this information.
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