Symptoms dismissal & chronic illness

Worried you might have a blood cancer?
1

Hello all,

This may turn into more of a rant than anything else…

A few years ago, I was diagnosed with both pots and CFS. Both these things keep me on my toes with symptoms fluctuating all the time however, a few weeks ago I felt something wasn’t right. My fatigue suddenly worsened along with my dizziness, shortness of breath, weakness and pain. I also started having new symptoms such as widespread & unexplained bruising on my back, weight loss, bloating and a fainting episode (fainting being super unusual for me - bloods were taken, wcc was a little high.)

After a few years of chronic illness, I don’t often consult dr Google because it tends to offer questionable advice with a hefty side of anxiety. With this in mind, I went into a gp appointment completely unaware that this new set of symptoms could be such red flags. Without any form of examination other than listening to my chest / checking pulse & bp, the doctor put it down to CFS and said I just have to learn to manage everything (I am almost 20 and have been ‘learning to manage everything’ since 15.) I left my appointment in tears feeling utterly dismissed knowing something was wrong but receiving no guidance or explanation.

I called 111 that evening and thankfully, the nurse was wonderful, thorough and seemed quite baffled by the doctors dismissal - she said she has concerns and I need urgent further investigation incase of blood cancer.

Whatever the outcome, I suppose I’m just wondering if anyone else has had similar issues with doctors dismissing symptoms you know aren’t right for your own body? Particularly those with chronic conditions where everything under the sun gets is pinned on those…

Thank you!

Emily.

Edit: I now have a blood test booked in for next week. If this comes back normal, is it still worth pursuing further help? I’m unsure if bloods have to be off to indicate blood cancer or not.

2

Hi @Starryapple
Welcome to this forum -though I’m sorry you find yourself here.
You clearly already have a lot to cope with as having both CFS and POTS is surely quite enough to navigate.
But you know how you normally are affected and those recent symptoms are not your norm so you are quite right to want to pursue this. The trouble with having a chronic condition is that medics may want to lay everything at the door of the chronic conditions without considering the possibility of something new and different.
If your blood counts come back at all abnormal, it might be worth discussing with your GP a referral to a haematologist for further investigations? Hopefully it’s a blip. White cell counts can go up for many reasons including fighting an infection but it’s worth keeping an eye on them.
Hope you manage to get some resolution soon.
Chrissy