Answer Summary

Members shared many unexpected symptoms tied to their MPN or PV diagnoses, with fatigue being the most common theme, described by many as a... Read more

Members shared many unexpected symptoms tied to their MPN or PV diagnoses, with fatigue being the most common theme, described by many as a level of exhaustion far beyond what they had ever experienced before. Several members also noted surprising symptoms like intense itching, nerve pain, numbness, blurry or double vision, night sweats, foot and leg cramps, brain fog, and a condition called erythromelalgia that caused painful burning in the legs and toes. A recurring theme was the relief of finding others with the same experiences, along with shared hope around treatments like Jakafi, Pegasys, and interferon as alternatives to hydroxyurea.