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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (747)Comment receiving replies
Thank you so much for all of this information. We were advised to go to the MPN center at the Mayo in Minnesota. I am calling them tomorrow. I will follow up
How have you dealt with this for so many years? My daughter had to quit her job. Her symptoms off the drugs are very bad that is why she went on but being on them is so very much worse. She has no life
Replies to "@leene808 Thank you so much for all of this information. We were advised to go to..."
@dmcj there are several MPN specialists at Mayo, Rochester. Getting another opinion makes a lot of sense at this point.
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@dmcj well before I got on the medication I was having severe symptoms as well. TIA’s horrible migraines, difficulty breathing. I didn’t have a diagnosis yet until they did bloodwork so once the blood counts came down with the medication thing started to level out I’m sure getting an opinion from Mayo Clinic will help figure out what’s right for her. You’re doing the right thing. I hope she finds relief. I’m a nurse and I did work through the whole process at the hospital, but I ended up quitting after five years and I’m now doing something less strenuous.