If you need urgent support, call 999 or go to your nearest A&E. To contact our Crisis Messenger (open 24/7) text THEMIX to 85258.
Read the community guidelines before posting ✨
Options
My brain
Former Member
Posts: 1,876,323 The Mix Honorary Guru
Okay yes I am only 19 and I am a bit young to be going through what i am experiencing but I guess it's all about possibility and not rarity. 2 months ago I started developing neck pains. went to see a GP and she said that it's probably neck strain because I work in IT, whyy do people always point fingers at IT?! weeks after I started getting random sore spots on the left side of my head, again fingers were pointed at IT and I was being told I was staring at the screen too long, as the days went on the pain was starting to get unbarable and eventually I developed another symptom my vision went blurry, day after that my vision was slowly doubling and eventually my left eye got stuck and wouldn't move to the left, yes it hurt when I tried moving my eyes left, it would put pain on my head, but then I also developed another symptom where my tongue would swell up and go numb on the left so I phones up my GP's surgery and asks to book an urgent appointment when they said I'd to go to A&E so off I went to A&E, they checked my heart rate, blood pressure, took blood samples, checked my reflexes and my results came back as normal. I went to the opticians, they checked my eyes, said that my eyes will either clear up and it's nothing or there is something causing it however the optician sent the results from my eye test to the hospital who then asked me to come on to the eye ward, I got an eye test there asking me what letters I could see on this board, then I got refered to an eye specialist on the same day who looked into my retina, who then refered me to orthoptics who identified that the eye muscle in my left eye gets stuck and one move to the left. I had a prism fixated to my glasses which would merge the vision in both eyes together so my vision is single. I also got refered to another eye specialist on the same day who then looked at my retina only to suspect the possibility of brain swelling or a brain tumour so he put me in for an MRI scan. Week later I gets asked to come in for an MRI scan, 3 weeks after that I gets my results and they found something on my brain but they don't know what. Now I've to go to see a neuro specialist on Wednesday at 5:30pm. also weeks ago my eye symptoms cleared up but yestaday they started to come back.
Here is a pic of the mess I'm in.
Here is a pic of the mess I'm in.
0
Comments
You have my sympathy, and my best wishes for a speedy and full recovery.
thnx also just to let you know I got diagnosed as intersexed cause I found I wasn't functioning normally, etc down there and I started developing these small boobs and I had my bloods taken for that too.
Was your appointment with the specialist today? If so I hope it went ok and the news wasn't bad? Do let us know how you got on. This must be really difficult for you - it sounds like so much has happened in a really short space of time - a lot to get your head around and comprehend. *hug*
I wondered if you know about our chat sessions? They run regularly and we have some that are purely for giving and receiving support and others that are general chats to take your mind off things. If you haven't been in before do check them out as you'll probably get quicker responses in there. They are all listed here:
http://vbulletin.thesite.org/forumdisplay.php/144-Announcements
Take care
Aww thnx hun! and isn't the chat sessions called "ask the site"? Also I would like to show a mass email which I sent off to lots of staff at college and it explains most things. I will go over what it doesn't explain.
"This is something very important that concerns my tutors. It's about a brain tumour, yes it's confirmed that I have a brain tumour and it's been putting me through a lot of distress and severe pain but on top of that I am being as positive as possible however I'd like you all to know about what I am having to go through. I get very sleepy and as my eyes start to feel tired during the day I got put through a lot of pain.
I have a tumour on the cilvus which is part of the brain near the pituitary gland according to the neuro specialist I saw today. I appearently was born with cells I should've only had as a fetus but these cells remained and didn't disappear, sometimes they remain in the spine however sometimes they remain in the brain which in my case the brain.
It's most likely that I have a tumour called "Chordoma" but they haven't confirmed it yet. My tumour isn't terminal nor do they know if it's malignant or benign yet but it can spread to the kidneys, liver and lungs.
Due to the rarity of the tumour it can only just about be treated therefore I may have to go to Boston USA for treatment. I'm waiting for a biopsy to confirm if it's malignant or benign then they will give me radio therapy, if that doesn't work they will decide what to do from then. If I have to go to Boston USA I will be given something called "Proton Therapy", It's uncommon people my age get this tumour, most people get this tumour in their 60s or 70s.
I did have shingles and still do have shingles which then I developed symptoms which is what got an eye specialist concerned. If it wasn't for that eye specialist I wouldn't have been put in for an MRI scan and I may have been on deaths door by now without even being aware of it.
I'd ask if I could do my work from home however I know that if you gave me that opportunity I wouldn't want to do it because I'd feel at home rather than at work if you get what I mean. I will continue to come into college though." END OF EMAIL
Okay so I am very deaf, got very bad vision and when I talk it sounds like I am whispering however I sound very loud to myself. I am having to use pen and paper as a form of communication.
Hi Helen, I just wanted to explain really quickly. askTheSite is our confidential question and answer service, you submit a question and you'll get a response from an expert advisor within 3 working days.
Chat is open four nights a week for 2 hours and is a chance to chat in real time to other members of the community as well as get some support. Here's the info:http://www.thesite.org/community/thesocial/chat
It sounds like there are a lot of unknowns at the moment around your physical health and this waiting must be really hard on you. It's good that your college are aware of what's happening and hopefully they can give you the support that you need. Do let us know what kind of response you get *hug*
Things are pretty much in limbo until you get the biopsy results, but in the mean time You might find Chordoma Foundation peer support useful.
good luck
Yes college are being easy on me, put me in for more classes but then I got sensative to light and I can only come in when there are rooms available for just me and another member of staff so I can work in the dark however I have passed most of my course and they're going to make sure I get onto my next course because of the situation I am in. I've to get better at my maths and english also but they're ensuring I get onto my next course as they don't think it is fair that I carry on with education as hard as everyone else while in a situation like this.
I'm too young to be going through this.
Went to hospital today, had to be there for fuckin 9am in the pissing morning *rollseyes* haha! Got prescribed some morphine because the painkillers I am on "co-codamol" weren't working. They did a pre-operative check up which consisted of taking my bloods and blood pressure, checking my heart rate, er... checking my vision with a pen and taking my temperature on top of that I was put in for a CT scan and I had to fill in a bunch of forms. On friday I've to go in for a biopsy, they're going to stick these packets up my nose or something idk what those are for but yea they've to go in through my nose to get to the tumour I will also have to stay in for 5 days before I can go home, they will be putting me on steroids to ensure that the tumour doesn't swell after surgery and I should crave for certain foods.
Thanks for coming back to give us an update. It sounds like you're being so brave - going through all this pain and treatment must be a shock and really upsetting, but you seem to be dealing with it very positively.
I just wanted to say a massive good luck for Friday, I really hope it goes well - please let us know how things went as soon as you can.
Big hugs and take care *hug**hug*
So yeah this morning I will be going to college but I would like to let you know that last night I gave the Morphine a try out and it had no sleepy effects on me meaning it definately wont in the morning! haha so erm got up this morning, took co-codamol x 2 which is 60mg codeine and 1g paracetamol which is a hella lot, before the I got prescribed Morphine I was taking 800mg Ibuprofen with it. Anyway I've took Morphine this morning as the co-codamol didn't work, that's 10mg Morphine which generally isn't much and going to see how it performs!
No but I had a reaction to the steroids they put me on or it could've just been stomach cramps.
I'm at home, I wanted them to discharge me. On top of this morning I woke up with a clogged up nose, both of my nostrils were blocked with blood and I'm getting salty taste in the back of my throat however it cleared up.
The nose bleeds stopped however my saliva has gone from red to orange to yellow due to the lack of blood that is now leaking out so that's a sign I am getting better.
I'm not happy. Mum wont let me continue my transition until the tumour has gone just incase I get beat up and it makes the tumour worse and the NHS are taking forever just to test the tumour.
I am not gonna say your mum is right or wrong in not letting you continue your transition. But it sounds to me that she does care about you, and wants you safe. What do you think? Have you tried to talk to her about this. How its making you feel emotionally? I can see your mums point of view.
Sorry to hear how tough things are. We all care and are here for you.
Sent from my GT-S5830 using Tapatalk 2
" So I say thank you for the music, the songs I'm singing, thanks for all the joy they're bringing, who can live without it, I ask in all honestly what would life be? Without a song or a dance, what are we? So I say thank you for the music, for giving it to me "
'' It's a beautiful day and I can't stop myself from smiling "
Same here! I also noticed I have developed a new vision symptom. If I move my eyes left or right my vision judders as my eyes move but if I move them up or down my vision doesn't judder. On top of that I had some irritation up my nose so I kept blowing for an whole hour and eventually this jelly shot down with a lot of rock solid dry blood attached to it.