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ME for 5 years. Found out today it's actually a brain tumor that's causing my illness.

Posted , 13 users are following.

OliverTatlow
OliverTatlow

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

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  • sally_14743
    sally_14743 OliverTatlow

    Posted

    Hi. Oliver 

    so sorry to hear your news.

    but at least now you are being treated .

    although the treatment is scary at least you know what you are dealing with what can be done and what your future will be. After years of getting worse and not receiving any help. 

    My husband has been diagnosed by a neurologist with CFS which they now have discovered he also has had undiagnosed diabeties for several years. The doctor said to him once his diabeties gets under control his CFS should disappear?  

    Makes u wonder if his CFS was caused by undiagnosed diabeties ?.. 

    Hope all goes well. 

    Sally 

     

  • JulieBadger
    JulieBadger OliverTatlow

    Posted

    Hi Oliver, really sorry to hear you have been misdiagnosed all these years.  Your problems do hint towards ME/CFS in my experience, although not the numbness down the left side.  My GP ordered an MRI at the beginning and I've had diabeties checked. 

    It doesn't seem right that the same checks aren't done for all of us.  I bet there are one's I haven't been checked for either.

    Good Luck through your operations, keep strong and look to the future

  • Scoobydoo65
    Scoobydoo65 OliverTatlow

    Posted

    Hi Oliver, So sorry to hear this has happened to you. One wonders why we have GP sometimes hey, just blooming useless most of the time. Thank you for posting and alerting others. God bless you xx
  • jeanp
    jeanp OliverTatlow

    Posted

    Hi Oliver,

    I'm so sorry to hear about your diagnosis. As for your experiences with doctors, yes they should have found the problem earlier. Thanks for sharing your experience with us, it will almost certainly help others to find out what's wrong earlier. I wish you well for your recovery now you know what it is.

    Jean

  • sunwyn66141
    sunwyn66141 OliverTatlow

    Posted

    Hi Oliver,

    I'm sorry to hear about the tumor, hope they can take it out without causing harm.

     

    I'm afraid that yours is not a particularly rare experience.  A couple weeks ago I read on another forum that someone was misdiagnosed for 5 years until they suddenly found out he had prostate cancer and it is now in his bones.

    So you might want to get the other end checked too, just in case.

    Good luck, and God bless you,

    Sunny

  • jackie00198
    jackie00198 OliverTatlow

    Posted

    Hey, Oliver,

    What a sad, cautionary tale. I'm so sorry you've had to go through this. You're helping everyone on this forum by sharing your story. I wish you all the best.

  • Flowerlady
    Flowerlady OliverTatlow

    Posted

    Hi Oliver..

    I am so sorry to hear about your problem, and I cartainly hope that the hospital can do something for you.

    I don't have alot of faith in doctors, I were diagnosed with Fibromyalgia 3 years ago, and I know I am much worse now, I demanded to see Rehumy again which I did at begining of August..he sugested I may have ME..but guess what they have not even contacted me with blood results or nothing. So Wed am I am going to doctors to have it out with them. I do hope everything goes well with you

    God Bless you...Anne..

    • OliverTatlow
      OliverTatlow Flowerlady

      Posted

      You do right Anne. It's definitely a mistake to assume that doctors know what they're doing as they are often just using guesswork. While there are plenty of good doctors out there, there's also a lot of poor ones.

      Based on my experience of the last 5 years I think the person who knows and understands your illness best is you. Don't let the doctor fob you off. Having said that it's often most difficult to be assertive and stick up for yourself at times when you're feeling like crap. Hope all goes well at the doctors. I've found that taking someone with me to help fight my corner is very helpful as well.

    • jackie00198
      jackie00198 OliverTatlow

      Posted

      I have a pretty low opinion of doctors right now. I have a wonderful dentist, but that's it. I'm treated unbelievable poorly by my CFS doctor. When I see him, I need to rest on a chaise in the waiting room. The last time, there was no one else in the waiting room, but they came out and told me I needs to wait outside in the corridor. Ironically, he is the only doctor who treats me like this. All my other docs, from my dermatologist to my gynocologist, understand that I have to rest and let me do so in the waiting room, no matter how many other peope are there. Needless to say, I'm going to see another CFS doctor.
  • alison44235
    alison44235 OliverTatlow

    Posted

    That is terrible. I have all the symptoms above and often nearly faint. I wonder whether i should have a M.R.I. scan a bit frightened about that though.

    Thanks for the imformation and the best of luck.

    • jackie00198
      jackie00198 alison44235

      Posted

      Alison: are you frightened about the process of an MRI scan, or about what you may find. If the former, the process is easy. If you're claustrphobic, there's even "open" scanners. I've had several MRI's over the years, and have had no problems. If you're afraid of what you may find, I'm sure it's extremely rare to find an organic reason for symptoms, such as a tumor. 
    • JulieBadger
      JulieBadger alison44235

      Posted

      Hi Alison, if you do have an MRI scan they offer that you can take your own music.  That helps alot because the machine hums loudly.  Make sure you take your favourite CD with a loud strong beat.  Silly me took a nice calming fairly quiet one - at times I couldn't hear it. 

      I have had an MRI for the brain and I've had my spine scanned.  The MRI was just 10/15mins I think.  The spine was over an hour (it was agony with me in tears cos you're not allowed to move - not what to do to a Fibro sufferer!)

    • OliverTatlow
      OliverTatlow alison44235

      Posted

      Hi Alison. Sorry to hear about your symptoms and can understand your concern about undergoing an MRI scan. I would strongly urge you to try and have one though to find out if it is a neurological abnormality causing your symptoms. Especially after you've read this you're probably going to be worried about it now until you find out.

      While it's not what I'd call an enjoyable experience, it's not intrusive or painful either. They basically strap your head into a cage like contraption and then you just lie still for about 20 minutes while they do the scan. It's quite noisy and a little bit claustrophobic but they give you some ear defenders to wear which means it's not too bad.

      Like I said above, if it is a neurological issue then the sooner it's diagnosed the higher the chances of it being effectively treated. It's just 20 minutes of discomfort for something that's possibly life changing.

      I hope you can find the courage to go through with this and wish you all the best for getting your issues resolved.

  • Qwase
    Qwase OliverTatlow

    Posted

    Thank you for taking the time to share. 

    I know it won't help but my heart goes out to you and your friends and family. There's nothing at all I can say so I won't try. I know it will just sound lame at best, patronising or offensive at worst. 

    Take care, I wish you all the best.

    And thank you again, I'm sure you probably have a million and one better things to be doing right now. 

    Xxxx

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