← Return to Essential Thrombocythemia: Looking for information and support

Discussion
Comment receiving replies
@esperanzam

I can identify with your statement of feeling like your a doctor's nightmare. I was diagnosed with MAC, which is a non-infectious lung disease, and I have had asthma, and multiple lung issues for years. So I have at least two rare disorders. 🙁 Up till now, I have not had any problem with the Hydroxyurea except for heartburn. I take Zantac for that. Also 3 medications for the asthma. Recently had a flare up of the lung congestion/asthma after my platelets and white blood cells have been pretty altered. Guess my immune system is affected. I was 64 when diagnosed. 68 at present. Been battling with leg and calf pain... sometimes it feels like my bones are hurting. For 6 months I have done everything they have suggested and still having pain.

Jump to this post


Replies to "I can identify with your statement of feeling like your a doctor's nightmare. I was diagnosed..."

I forgot to mention that my Bone Marrow did show JAK2 mutation back in 2015. I do have sore in my mouth almost continously but not sure if they are from Hydrea or my asthma meds (I rinse mouth always after using inhalers) so I feel they are from the Hydrea, but are tolerable as I know side effects of some chemo are much worse.