I have a lesion in my pons. From 3 mri scans they are unable to tell if it is an inflammation or a tumour. Having had this hang over me for 2 months I’ve just been told that I need to wait 3 more months and redo the mri again to see what change has happened so they can decide what it is.
Over this period I have had symptoms that have changed - shaking, loss of balance which at its worse left me unable to walk more then a couple of hundred meters and falling regularly. My breathing is struggling and so is my thinking. I get a lot of nerve pain in my arm and leg on my left hand side. Some days seem a lot better than others though.
I have 3 kids who are 16,13 &11. Unless it’s a certainty then they don’t need to know what’s going on and worry. Equally though it makes me very anxious about telling friends in case it gets back to them as that would be horrendous. It means that I don’t have as much support
How do you cope with the waiting? I’m finding it awful living with the uncertainty.