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I was diagnosed with ET last December and recently have begun to experience intermittent numbness and tingling in my arms. I am wondering if this is a sign of disease progression or possibly related to something else. I am currently taking low dose aspirin daily and am scared of having to take additional medications due to side effects. Just wondering what others have experienced.
I am getting a second opinion with a MPN specialist in a few weeks. I will be adding this to my list of questions and concerns.
If you need a real MPN specialist, try the MPN Research Foundation website. https://mpnresearchfoundation.org
I know there's another good list out there. It's likely not at AAMDS.
Ask for it! Well informed patients get the best treatment! Do you really have an MPN specialist? My 3rd local onco, which I eventually fired told me to go anywhere I wanted. He was getting hysterical and said, "go! Go anywhere you want! Go to MD Anderson! I've never even seen a case of MPN!"
You know I did! 😁
I am only taking low dose aspirin now. I am wondering if the specialist I am seeing soon will switch my meds.
Are you taking Hydroxyurea?
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