Brain tumour fear. Not coping with wait

[Mummybee]

Hello,
This is my first time posting, but I've been a long time reader.
Brief back story;
Around 6 months ago I was feeling light headed a lot, ear felt blocked and was getting chills so off I went to doc.
He has a little look, gives me some antibiotics and sends me on my way. I think "great, I'll get better now" but I didn't. So I went back. He ordered an MRI to check my ears and BAM, hello health anxiety. I was petrified and did the worst thing I've done in my life and googled MRI. I had a night of panic and the next day twitching all over my body started and has never stopped. Back to doc after MRI and he says all good! (I've written myself off with Ms or a brain tumour, imagined my babies with no mother, all that). The MRI did quiery IIH (idiopathic intercranial hypertension) as I had a tiny difference in the size of my optic nerve so I was sent to a opthamologist who looked and said "all good, no swelling perfect eyes and vision.
So skip forward 6 months and i still had twitching and some jerking of muscles but was ok apart from that.
Then I went to Yoga and during a pose with my head held down for ages I could see kind of arcs in my vision when I stood up. It went away after a few seconds so I tried to ignore and not Google. Then it got worse and it would happen all the time, even if I just bent over a little bit I would get these dark circles in my vision when I moved my eyes side to side.
So panicking I went back to GP, he does blood tests and discovers my prolactin level is slightly high and sends me back to opthamologist and refers me to a neurologist! I have to wait til Thursday to see the neuro but the opthamologist told me it's still all fine with my eyes and optic nerves.
My anxiety has never been worse, I can't eat or sleep, my muscles are going insane and my jerks have come back two fold. I've had splitting headaches and feel sick to the stomach all the time.
Help me.. Please

[WorriedRose]

Hi I feel the same as you! I am waiting for MRI results and convinced myself I'm going to be told I have a brain tumour or MS. I've been getting numbness in the right side of my face and my vision is weird in right eye.
I also understand you can't eat or sleep, but maybe tell yourself that they have already ruled out the worst. I've heard Sometimes anxiety will give you symptoms that were never there to start with. Wishing you the best & hope you get some sleep x

[Mummybee]

Thanks Worred rose
I'm trying to comfort myself with the thought that I'd be very unlucky to have health anxiety and a brain tumour, but the symptoms are very real and the vision one is very very frightening.
I'll be thinking of you too... Keep me posted
Mummybee

[cattia]

Your prolactin levels can be high for many reasons. How long since you were breastfeeding? They take a while to return to normal. Prolactin levels can be elevated because of hormonal imbalance. If it was a brain tumour it would have showed up on your MRI x

[Mummybee]

My newly aquired HA brain is telling me that my MRI was five months ago and I wasn't having vision problems then so it must have developed since then! 😕

[countrygirl]

Mri is incredibly sensitive, they can see individual nerves and microscopic dots on brains. As had been said your prolactin could easily be due to a hormone imbalance - were these the blood tests your dr has done?

IS your blood pressure low as this could be reason for your vision symptoms when you bend over.

Remember there is usually a none fatal reason for symptoms and that anxiety will make symptoms worse and bring on 200 new ones!

[Josh1234]

It's very, very unlikely that you developed a brain tumor in the 5 months since your MRI. Brain Tumors are rare, as is, so the chances of you getting what you fear, immediately after you checked out for it, is like the chances of being struck by lightning. By the time brain tumors start to show symptoms, it would become pretty apparent to a doctor that you had one.

Besides, your symptoms dont even sound like brain tumor symptoms. You'd be having bad headaches and nausea/vomiting, seizures, weakness or numbness on one side of your body, real visual and hearing disturbances, etc

[Mummybee]

Thank you.
That helps a bit.
I've had every test I can think of on my blood. Muscle electrolytes, diabetes, cortisol, all hormones, full blood counts, two prolactin ones(both slightly elevated) thyroid tests etc etc. my blood pressure has been checked several times all normal, I think my GP has rules everything out so now sending me to neuro 😔

[Josh1234]

Your symptoms are also symptoms of anxiety too.

[WorriedRose]

Thanks Worred rose
I'm trying to comfort myself with the thought that I'd be very unlucky to have health anxiety and a brain tumour, but the symptoms are very real and the vision one is very very frightening.
I'll be thinking of you too... Keep me posted
Mummybee


How did you go with your MRI? I had mine it came out fine.
I had a doctor check my b12 and i was so deficient that my symptoms
were from pernicious anaemia! I'm now on b12 injections which have really made a difference. Anxiety can also cause the symptoms but if you havnt had your b12 checked maybe get them checked? They're not checked in routine tests I can't imagine why not. Hope everything is well with you :) xx

[gonzosattic]

Look, it's something you have to take step by step. I've been to the doctors so many times thinking the worst and it always turns out to be nothing... I, like you worried myself sick. I had/have catarrh from my anxiety but of course I thought the worst so I went to GP who refered me to a specialist who put a camera up my nose and down my throat and guess what was wrong, nothing.
Most GPs will send you to a specialist because he/she hasn't found anything so the specialist will take a closer look. It could be as simple as being very stressed thus affecting your blood pressure and therefor your vision.

[katniss]

Mummybee - I am a little confused with your original post. Did you mean they found IIH in your MRI? Or they suspected it but the opthalmologist negated it with their test? Anyway, you have had a clear MRI 5 months ago. That's awesome!! Honestly, I would NOT worry about a tumor or MS. Those two are definitely not the problem :)

[hanshan]

Hi Mummybee,

I've had arcs like that from having my head in an odd posture all my life from early childhood. I've always assumed they were normal.

I did have what is called a scintillating scotoma one time - a real light show, but essentially harmless.