ME for 5 years. Found out today it's actually a brain tumor that's causing my illness.
Posted , 13 users are following.
I was diagnosed with ME/CFS 5 years ago and have been getting gradually worse ever since. Last week after I fainted at home, I was taken into hospital and had an MRI scan that found a tumor in my right frontal lobe.
Just got back from seeing the neurology consultant today. He says it's a lower grade, slow growing tumor that's almost certainly been there for several years and has very likely been the cause of my illness for the past 5 years.
Symptoms I suffer with are:-
severe mental and physical fatigue after any kind of exertion.
dizziness and loss of balance.
nausea
palpitations and shortness of breath.
numbness down my left side.
confusion and disorientation
difficulty concentrating
broken and unrefreshing sleep
intolerance to stimulants e.g. caffeine, alcohol
sensitivity to noise.
Over the past 5 years I've seen about 15-20 different doctors and even raised the question of seeing a neurologist with several of them and every single one of them said that they thought there was no chance it could be a neurological problem and wouldn't give me a referral. This was based mostly on the fact that I wasn't getting headaches.
Following my experience, I urge anyone with a diagnosis of ME to go and see your doctor and insist on a referral to see a neurologist. Don't let them bully you out of it, say you want an MRI scan to rule out any neurological complications. If like me this is the cause of your ME then the longer it goes undetected the less likely it can be treated effectively.
My tumor has become invasive and will be difficult to remove. They're certainly going to have to remove substantial parts of my brain to get it out and even then probably won't be able to get it all. The annoying thing is that it might have been far more simply dealt with had it been detected earlier.
2 likes, 17 replies
katrinablank OliverTatlow
Posted
I've been battling CFS since traveling to Uganda in May of 2012. In Aug. 2014 a malaria test was sent; sure enough I had been infected with malaria, plasmodium vivax while in Africa. I supsect the malaria gone untreated caused the tumor and triggered the CFS I now face.
godbif OliverTatlow
Posted
Sorry to hear of your misdiagnosis maybe you have already had surgery. I had a similar experiance and had many of the symptoms that you have suffered but I also did not get any significant headaches. I had many tests to try to discover why I was always so fatigued. The endocrinologist treating me could not find the reason for my fatigue and I put it to him that I may have CFS/ME. Thankfully, he did not agree and I was referred for a MRI scan and it was discovered that I had a very large epidermoid tumour on my brainstem. The tumour was partially removed within a month of the MRI scan in 2009. If the consultant had agreed that my symptoms were due to CFS/ME I think that would not be here today.I agree that anyone with a diagnosis of CFS/ME should insist that they be referred for a MRI scan.