I was diagnosed with ET in the spring, but apparently I had it for two years before diagnosis. My main symptom is Fatigue. Will that increase the longer I have ET? Or is my level of fatigue more related to my platelet level?
Does anyone have experience with this?
I experienced EXTREME exhaustion (fatigue), bone bone, headaches, heaviness in extremities, memory fog, etc. It didn't go away until I flew to Cornell Medical center for a MPN consulation. Most hematologist and oncologist know little about MPN. He started me on Jakafi. It's an off-label drug for ET. But his thoughts was if you can decrease the cytokines, that the inflammation and related symptoms would decrease. And it did. I finally found a MPN specialists in my hometown. I had a chance to meet him when my Cornell Dr. Invited me to a Patient symposium in NY and the International MPN convention, last week. Both were speakers at the convention. So, NO with treatment the fatique should go away. Some hematologist think just watch platelets and if they go over a million to treat. Or just give them a baby aspirin a day to prevent blood clots. But if you are having a decrease in your quality of life, you need someone who will have empathy and think outside the box. P.S- I have ET probably 2 years as well.
Yep. Fatigue is the worse. No rhyme or reason why one day is worse than others when my schedule is about the same. Diagnosed in 2020 with ET. Just turned 80. I wouldn’t be concerned but it’s so sporadic. Day by day. …. Even hour by hour sometimes. Wish people understood how different this fatigue is from “normal” fatigue. It’s not just being tired. And of course the brain fog ….but I also have long Covid which also causes both. Hang in there. 🤓
I’m only getting more and more tired
Welcome to the club
I feel tiered all the time, I am 53,I am sorry you all do, my life feels like shite,sorry