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Brain Tumour worries! Advice?

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Become part of the Welcome Squad! Apply here! 28-10-2014
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    Hello, my name is Patrick Owers. recently over the past month or so, I have had ongoing headaches and facial twitches, they started off minor, nothing too distressing, however as the weeks progressed. new symptoms started to appear.
    I now feel extremely dizzy, my tongue has a weird dry bitter taste in my mouth, I get ringing ears on occasion. I feel sick to my stomach, my arms and legs feel like jelly. I can't walk in a straight line. My speech is all stuttery and I can't even talk properly on occasions because the words just won't come to my mouth. I'll even forget simple words I knew previously with ease. I also can't read things properly, like I will finish the sentence with what my mind thinks it says but then ill get it wrong and its so frustrating, and just generally my eyes are out of fcous, and I can't focus on what I'm doing because of this anymore.

    I also get CONSTANT muscle spasms or twitching sensations on the skin, like small twitches of the muscles only visible by looking at certain areas of the skin, doctors haven't seen them yet because they can come and go at any point. also, at night when I try and sleep, my brain will zap my heart and jolt me awake, and this happens every time I try and sleep.

    I also get severe stomach cramps and bouts of sickness, especially in the mornings. and I will sweat excessively for no reason. I will also feel things on my skin that aren't there, like a spider is crawling on my skin.

    Oh, and I also get the classic headache symptoms, like a pressure pain my temple area and the back of my head, that seems to radiate from the lumps, and guess what? it's worse in the mornings!

    I have also felt the back of my head and felt several lumps. surely you understand my concerns here.

    I feel easily agitated, I'm always yelling at my family, telling them to help me get the doctors to do tests to make sure it's nothing like a brain tumor, better to be safe than sorry, I keep telling them.

    I eventually got heeded and referred to a neurologist who, in turn, said exactly the same things as the 20 other doctors I've seen. did a neuro examination, ll my motor skills, reflexes, eyes, muscle strength were okay, he didn't test my speech however or my memory. he has sent me for a brain scan which I have to wait 2 weeks for, which is something that I am having trouble coming to terms with.

    I am considering going private, I am not getting the results I need. my Out-of-hours GP understands my concerns and recommends it and this way, I can get the scan done straight away.

    I am 21 years old with no previous history of health problems, or anything that runs in the family. relatively healthy, slim, very fit and active, in university in Leeds and then soon as I get home this kicks off.

    I did have a head injury back in 2007 when I banged my head off the oven in my house and my mum said she could see bone, but that was glued back together and nothing happened after that.

    But on occasions, I would get a burning smell in my nose, I would get stuttered speech and balance issues, but they would subside and never come back, but now its like all the symptoms that were there before have came back in a big cluster of symptoms that are just ruining my life!

    Any advice or helpful tips to tell me? I know brain tumors/cancer is very rare at my age, less than 1% chance apparently. but what I do want to know is whats the general prognosis for a brain tumor? I know it depends on the location but with current technology and current knowledge of the conditions, would it be a good prog or bad?

    I am really working myself up here, and I just want this to go away and be done with so I can live my life again, if this continues I can kiss university goodbye! It's THAT bad.
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    Ok...so you know brain tumours are rare and you are getting a scan done.

    I am not sure what you expect people to say....I doubt a lot of people here have an experience of being afflicted with a brain tumour.

    Your prognosis will depend upon the brain tumour exam

    Also, a neuro exam does not test your memory and I am assuming the doctor spoke to you so he would have assessed if your speech was normal or not.
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    health anxiety. i might be wrong but this kind of 'everything is wrong with me' but the exam is ok is typical.
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    Unfortunately I don't know anything about the possible prognosis. All I can tell you is if you aren't happy about the progress of your diagnosis then go private, because it does sound serious. If it is just the worry that is driving you to go private because two weeks sounds long, have a talk with your family and see what they think about you going private, and check how long it would take you to get your scans and things.

    Please don't Google your symptoms anymore because that will not help you - worrying about it will not make it any better! Trust me, I have a long term illness that I thought was potentially cancer, and worrying about it made me feel worse rather than better.

    Look at it this way, there is nothing that you can do about it right now in this moment, working yourself up will only serve to make you feel worse - there is nothing to gain from worrying. Try and be calm (I understand that is is difficult and frustrating) and weigh up your options carefully - private or continuing with the NHS. If you believe that going private will ease your worries faster, and you think it is worth it, then certainly go for it! It will benefit your wellbeing if you stop worrying.

    I hope I have helped a little bit, and I apologise that I know nothing about what the general prognosis is for a brain tumour.
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    No no, any words of reassurance are appreciated It's just really what I need right now. because I'm just thinking of the worst possible outcome. and these symptoms are really affecting my life. like I cannot continue with these symptoms. It's awful.
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    It's just that whatever causing this, doctors always say if you catch it early, then theres a better chance of recovery. and the fact that the symptoms are generally just destroying my life. I can't even eat properly anymore.
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    (Original post by Demonicham)
    It's just that whatever causing this, doctors always say if you catch it early, then theres a better chance of recovery. and the fact that the symptoms are generally just destroying my life. I can't even eat properly anymore.
    That may be the case - but worrying will not help. Please go private if you think that it is the best option for you, but other than that there is nothing you can do but wait for the scan. Trust me when I say wasting your time worrying doesn't help at all.
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    (Original post by Demonicham)
    It's just that whatever causing this, doctors always say if you catch it early, then theres a better chance of recovery. and the fact that the symptoms are generally just destroying my life. I can't even eat properly anymore.
    I have to agree with AlmostChicGeek. I can sort of relate to you as I and my doctor are 95% sure I have shunt failure and I may need a brain operation. Although I'm bricking it at times, I'm trying to not worry too much and don't want to let it destroy me.
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    I know. I'm generally trying not to worry. there's no visibly obvious symptoms meaning that whatever it is, It's nothing too bad. but I don't want to give it the chance to get worse, if you understand what I mean. generally for the whole 3 weeks I've had this it's just gotten progressively worse, each week presenting new symptoms and things that just generally halt my normal life activity. It feels like my life has been snatched away. I just want my mental abilities back. I want my healthy feeling body back and I want my life back. and I'm willing to try anything if it will help with this.
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    (Original post by Demonicham)
    I know. I'm generally trying not to worry. there's no visibly obvious symptoms meaning that whatever it is, It's nothing too bad. but I don't want to give it the chance to get worse, if you understand what I mean. generally for the whole 3 weeks I've had this it's just gotten progressively worse, each week presenting new symptoms and things that just generally halt my normal life activity. It feels like my life has been snatched away. I just want my mental abilities back. I want my healthy feeling body back and I want my life back. and I'm willing to try anything if it will help with this.
    Now this I completely relate to. I'm the same which is why I'm actually going to A&E again on Monday at the request of my doctor. I don't have any physical symptoms either which is why I need a scan and I've also gotten worse with my symptoms in the past month. 2 weeks is a really good waiting time though. I just had my referral through today which is the end of October. My doctor said that's way too long. I think it helps to find people who've come through this and why are still standing. I have a friend with the same condition as me whose been operated on 3 times but he's fine. I focus on him and tell myself I'll be fine.
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    If you have a brain injury (I do) then I believe that headaches are normal. I had them for years after my brain injury. I am getting them again now.
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    Ah, I'm so glad I'm not the only one! people have laughed and poked fun at me thinking I was delusional. I was referred to a psychologist before I was referred elsewhere. and basically I knew that the symptoms I was experiencing wasn't normal. so I decided that I need to be insistent to my GP and she eventually put the referral through to the neurologist. He checked me over, and since there was no symptoms in plain sight (like my twitches which can happen anywhere on the body at anytime, the neurologist didn't pick them up) so he sent me for a brain scan just to 'be safe' but he said that he was pretty sure it would be clear. The fact is I don't want to wait anymore. Who knows what state I'll be in in two weeks time. I don't want to find out to be honest either.best I get this seen to as soon as physically possible rather than wait and let the problem accelerate unintentionally.

    Apparently I can't do anything until Monday now so I guess I have to hang tough this weekend. God, I miss just going out and having fun, I was really looking to a chilled stress-free summer but its been the exact opposite!
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    (Original post by OU Student)
    If you have a brain injury (I do) then I believe that headaches are normal. I had them for years after my brain injury. I am getting them again now.
    I don't have a brain injury, the head injury I had was only a piercing of the skin on my head that went to the bone, no fractures.
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    (Original post by Demonicham)
    Ah, I'm so glad I'm not the only one! people have laughed and poked fun at me thinking I was delusional. I was referred to a psychologist before I was referred elsewhere. and basically I knew that the symptoms I was experiencing wasn't normal. so I decided that I need to be insistent to my GP and she eventually put the referral through to the neurologist. He checked me over, and since there was no symptoms in plain sight (like my twitches which can happen anywhere on the body at anytime, the neurologist didn't pick them up) so he sent me for a brain scan just to 'be safe' but he said that he was pretty sure it would be clear. The fact is I don't want to wait anymore. Who knows what state I'll be in in two weeks time. I don't want to find out to be honest either.best I get this seen to as soon as physically possible rather than wait and let the problem accelerate unintentionally.

    Apparently I can't do anything until Monday now so I guess I have to hang tough this weekend. God, I miss just going out and having fun, I was really looking to a chilled stress-free summer but its been the exact opposite!
    You're definitely not People have done the same with me. I was at A&E on Tuesday to be told to just take painkillers and wait for the referral, probably because I look perfectly healthy on the outside. If I do that, I'll end up with more brain damage and could die. I'm glad your doctor said that though, it is better to be safe than sorry and the more urgently it's done, the better.

    Argh, I know!! I was actually gonna go out but I'm stuck until Monday as well.
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    (Original post by hannah_dru)
    You're definitely not People have done the same with me. I was at A&E on Tuesday to be told to just take painkillers and wait for the referral, probably because I look perfectly healthy on the outside. If I do that, I'll end up with more brain damage and could die. I'm glad your doctor said that though, it is better to be safe than sorry and the more urgently it's done, the better.

    Argh, I know!! I was actually gonna go out but I'm stuck until Monday as well.
    It's just that powerless feeling you get realising you can't deal with this problem that easily. and it's not a matter of getting seen when you realise a problem and be okay, it's a matter of waiting until you CAN be seen. and if the doctor your given will even notice these problems. alot of the doctors I've seen, just took one look at me said it was stress, without even giving me a physical and sending me away, saying to practice some 'yoga'.

    alot of things can happen in two weeks. heck, this problem I'm having gets worse daily. and I'm unsure what the problem is. that's the worst part. not knowing what's causing it!

    I reckon if I go private, I'll get alot more attention and taken alot more seriously. considering payment is involved, NHS workers are usually procedural people that do the same tests over and over thinking that there'll be nothing wrong if his ECG's okay even though he's got a headache and he's feeling sick.

    I know man! I tried going out a few days ago to my friends party just to socialise and clear my head. but I ended up stuttering, forgetting words and it was so embarrassing! I miss being happy go-lucky! saying stupid but witty things just out of nowhere. I want that back. :/
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    (Original post by Demonicham)
    It's just that powerless feeling you get realising you can't deal with this problem that easily. and it's not a matter of getting seen when you realise a problem and be okay, it's a matter of waiting until you CAN be seen. and if the doctor your given will even notice these problems. alot of the doctors I've seen, just took one look at me said it was stress, without even giving me a physical and sending me away, saying to practice some 'yoga'.

    alot of things can happen in two weeks. heck, this problem I'm having gets worse daily. and I'm unsure what the problem is. that's the worst part. not knowing what's causing it!

    I reckon if I go private, I'll get alot more attention and taken alot more seriously. considering payment is involved, NHS workers are usually procedural people that do the same tests over and over thinking that there'll be nothing wrong if his ECG's okay even though he's got a headache and he's feeling sick.

    I know man! I tried going out a few days ago to my friends party just to socialise and clear my head. but I ended up stuttering, forgetting words and it was so embarrassing! I miss being happy go-lucky! saying stupid but witty things just out of nowhere. I want that back. :/
    Yeah I get that. I haven't been taken seriously by a lot of people. I think a lot of doctors don't like to admit it's not their special area so they give you stupid advice.

    You could go private, I was thinking of doing the same thing.

    I'm sorry. I forgot a few things at work and was trying to keep up with the same volume. The one thing I find helps with these things is a good sense of humour.
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    (Original post by hannah_dru)
    Yeah I get that. I haven't been taken seriously by a lot of people. I think a lot of doctors don't like to admit it's not their special area so they give you stupid advice.
    I've found this too. I was discharged from neurology 2 months ago and was told that my brain cysts won't cause any problem. I've spent a lot of the last 4 weeks with headaches. According to the sight tests, my sight is fine (it's actually better than it normally is) and I've not noticed anything unusual.

    So it looks like another trip to neurology.
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    I don't know much about your sort of problem but I've had a few concussions and whenever I do something silly like drop something or forget a commonly used word I always wonder if it's because of the head injuries. I think my memory, level of articulacy and concentration are not as good as they were So I can empathise somewhat OP. I hope we are both being over anxious and I wish you all the best. When you think something is wrong with your brain it's very unsettling and puts everything in perspective.
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    (Original post by OU Student)
    I've found this too. I was discharged from neurology 2 months ago and was told that my brain cysts won't cause any problem. I've spent a lot of the last 4 weeks with headaches. According to the sight tests, my sight is fine (it's actually better than it normally is) and I've not noticed anything unusual.

    So it looks like another trip to neurology.
    I really wish they wouldn't say things like that! It makes me angry that they can make people's health worse by doing it. I hope you manage to see someone again and they sort it out.
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    Well, all these symptoms I'm experiencing are kind of on and off, nothing sticks permanently. they like to present themselves at different times everyday.

    I've just rang my Out-of-hours GP and she said I should go to A&E and get a neurological assessment even though all they do is say that theres nothing acute and send me away.

    Just now, I'm starting to feel incredibly dizzy, like when I lie down, it feels like I could fall through my bed. I can smell the burning smell again. my right leg is going funny. I can still feel pain and my fingers touching it etc etc but it feels like its numb and generally not all there.

    I'm also getting a strange kind of sickness, like the kind of sick when you don't eat for a while and my stomach feels queazy. I'm also getting chest pains on and off.

    The twitches are also going crazy and just generally I can't live like this anymore. I can understand staying calm but in a situation like this, I'm not sure if there's any way of coping without medical advice or assistance.

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