I have recently been to see a new haematologist who has asked my GP to look into whether I could also have ME or Chronic Fatigue Syndrome. I am wondering whether anyone else on the forum has been checked for, or diagnosed with either of these conditions?
As I have previous written about on the forum, I was diagnosed with PV/ET 16 months ago, but despite having chemo and seeing my counts return to the normal ranges, my symptoms have not subsided, and in some ways have continued to get worse (mainly fatigue, migraines and brain fog).
I know I am not alone in continuing to experience debilitating symptoms despite treatment, as this seems to be a recurrent theme on the forum. My concern is that a diagnosis of ME (which itself has few treatments and no cure) could mean that the clinicians just give up with trying to manage my symptoms, which are all known MPN symptoms. I really don't just want to give up hoping that I will someday feel better, rather than resigning myself to feeling like this for the rest of my life, which seems to be what an ME diagnosis would mean.
So if anyone else has any experience of this and is willing to share, it would be greatly appreciated.