PITUITARY BRAIN TUMOUR -
DIAGNOSED 2 YEARS -
UPDATE
TO START AT THE VERY BEGINNING = DIAGNOSED TWO YEARS AGO WITH A PITUITARY BRAIN TUMOUR - OHHHH - I WILL LET THE LETTER I SENT OUT EXPLAIN IT ALL !
PLEASE EXCUSE THIS UNMITIGATED PLEA FOR HELP ....
I HAVE BEEN TOLD THERE IS NO FUNDING IN THE SOUTH EAST TO TREAT MY CONDITION ...
I HAVE BEEN DIAGNOSED VIA NUMEROUS MRI'S WITH A ENLARGED PITUITARY AND A TUMOUR ON THE STALK OF THE PITUITARY GLAND AND I HAVE BEE TOLD BY A PSYCHOLOGIST I HAVE A TRAUMATISED AMYGDALA GLAND ..... 2 YEARS AGO ..... Since then I have been shuvved from Pillar to Post !
I HAVE BEEN TOLD THAT SYMPTOMS WILL BE TREATED NOT THE CAUSE - BECAUSE NO-ONE KNOWS WHAT DAMAGE WILL BE DONE IF THE CAUSE IS TREATED ?
MANY SYMPTOMS ARE VERY VERY SIMILAR TO MENTAL HEALTH PROBLEMS
I KNOW IT IS NOT A MENTAL HEALTH ISSUE !!
I HAVE BEEN TOLD BY PSYCHOLOGISTS AND PSYCHIATRISTS ! ....
Just a few symptoms include ( in no order ) : HUGE WEIGHT GAIN, COLLAPSING VEINS, HYPOTHYROIDISM, BORDERLINE PCOS, MASSIVE MOOD SWINGS ( TOTALLY UNCONTROLLABLE and INTENCE - Can last five minutes or days - NEEDS DIAZEPAM TO CALM ME DOWN OTHERWISE I WILL CARRY ON - CANT CALM DOWN MYSELF AT ALL ) BRUISEING FOR NO REASON, EXCESSIVE TIREDNESS, HYPERACTIVE, MUSCLE WEAKNESS, IRREGULAR PERIODS, CONSTIPATION, EXTREME DIARRHOEA, LOSS OF PERIPHERAL VISION ( Goldman Fields tests done ) LACK OF CONCENTRATION ( If I read it HURTS AND MY HEAD SLOWS DOWN ) - HUGE MEMORY PROBLEMS - also I have to keep shutting my eyes otherwise it feel like there is too much information going in my head ...
I ALSO HAVE MY HEAD SHUT DOWN - NOT DUE TO PANIC ATTACK OR SOCIAL ANXIETY MAYBE JUST BECAUSE I HAVE BEEN TO BUSY ( Like go out for coffee and pop to a shop on way home !!!!! = THATS BUSY ) - MY HEAD SLOWS AND EVENTUALLY STOPS - SO I FALL ASLEEP - During this time I stutter and I cant get words I know to come out of my mouth, - I cant think - and the pain in my head, behind the eyes ( and travelling to the back of my head ) is IMMENCE - I have captured one of these 'Storms' on Camera - Please see link https://www.youtube.com/watch?v=G2uwxPQWMlI
Normally I have no trouble talking and can talk for England ! - BUT - When these 'Storms' Happen - that's it - EVERYTHING STOPS.
I AM NOW UNABLE TO LIVE A LIFE - IM AT HOME AND I TRY TO BE POSITIVE AND HAPPY - BUT I HATE MY LIFE - I CANT GO OUT WITHOUT SOMEONE - INCASE I GET ANGRY ( another side effect ) OR INCASE I GO GIDDY AND CANT STAND UP - I AM A BURDEN TO MY FAMILY AND NEED HELP
- I TRIED TO COMMIT SUICIDE A FEW WEEKS AGO - I AM DESPERATE FOR HELP
I HAVE NOW BEEN TOLD I NEED FUNDING AS THERE IS NO-ONE 'IN AREA' WHO WILL OR CAN TREAT ME ?? A PSYCHOLOGIST IS TRYING TO GET THIS FUNDING - ( I HAVE SEEN PSYCHOLOGISTS AND PSYCHIATRISTS WHO BOTH SAY IT IS A MEDICAL MATTER ALTHOUGH SIGNS ARE THERE FOR BIPOLAR - BUT IT IS NOT BIPOLAR ! - I HAVE ALSO GONE COUNCILLING - ( I talk to anyone and this isn't and issue - but have done what the doctors tell me - CBT Does NOT work - as my Mood swings are UNCONTROLLABLE and its as if I have a duel personality - like Jekyll and Hyde ) - I CANT EVEN BE LEFT ALONE WITH MY OWN CHILDREN IN CASE I OVER REACT AND GET ANGRY - AS I AM TOTALLY UNSURE WHAT WOULD HAPPEN - I DONT AND NEVER WANT TO HURT ANYONE - BUT IF SOMEONE COMES TOWARDS ME - I REACT ...
EVERYTHING IS UNINTENTIONAL - I DONT MEAN TO SAY OR DO ANYTHING BAD - BUT IT HAPPENS - AND WHEN I CANT THINK - ALL I CAN DO - OUT OF FRUSTRATION I BELIEVE - IS SWEAR .... WORDS THAT I NEVER EVER WOULD GENERALLY USE ... AND ANYWHERE IN FRONT OF ANYONE -
I AM NOT DEPRESSED - BUT GET TERRIBLY TERRIBLY SUICIDAL - I OVER REACT AND AM PARANOID AND THINK EVERYONE HATES ME - THEN IM FINE AGAIN AND KNOW THIS IS NOT THE CASE !!!
SINCE THEN THE FOLLOWING HAS HAPPENED !!! :
I went through the Pituitary Foundation who have been brilliant - They sent a video I sent them of one of my storms - and a list of my symptoms to their consultant/Endo/Psych/ etc - Their Endo/Pituitary Specialist said I needed to be seen immediately, and had no idea how I had lasted two years!! - lol - told this to my GP, who really had better things to look at on the screen of her computer - and WOULD NOT look at my video and was MOST UNIMPRESSED when I asked for a referral - and had to TELL her I wanted a ENDO and NOT a neuro -
she was most unhelpful - and resent me to a neuro - BUT NOW - after a VERY STRONGLY WORDED LETTERAND MANY TELEPHONE CALLS FROM MYSELF AND MY MOTHER !! - I have been refered to
Stephanie.Baldeweg -
Tel: 020 3447 9373
Fax: 020 3447 9201
Email: stephanie.baldeweg@uclh.nhs.uk
Location:
University College Hospital; National Hospital for Neurology and Neurosurgery
who just happens to be the Pit Foundations consultant who saw my video - I have just found out that the GP hasn't sent the letter of referal until Weds just gone - so the Pit foundation got involved AGAIN - and this consultant is looking out for my referral now - and will deal with me herself - so the Pituitary Foundation say - BUT - as they have done everything they say - and have even taken the time to ring and are actually interested - I trust them hugely!!-
Has to be said the Pit foundation were FABULOUS - if you havnt already checked them out
http://www.pituitary.org.uk/
It is estimated that there are approximately 70,000 people with a pituitary condition in the United Kingdom. To meet the need for information and support The Pituitary Foundation was set up in 1994 and was subsequently registered as a charity in September 1996.
The Pituitary Foundation is a national support and information organisation for pituitary patients, their families, friends and carers. We are the UK's leading charity providing support to people affected by disorders of the pituitary gland such as Acromegaly, Cushing's, Prolactinoma, Diabetes Insipidus and Hypopituitarism. ... ALSO HERE IS SOME INFO ON THE CONSULTANT https://www.uclh.nhs.uk/OurServices/Consultants/Pages/DrStephanieBaldeweg.aspx
IF YOU HAVE ANY ISSUES PITUITARY WISE PHONE THE PITUITARY FOUNDATION - AND DEMAND A URGENT REFERAL FROM YOUR GP - IT IS YOUR RIGHT
You are entitled to ask for a referral for specialist treatment on the NHS.
If you wish to be referred to a specialist in a particular field, you will need to see a GP at your registered practice. This is because all your medical records are held by your GP.
A specialist will only see you with a letter of referral from your GP. The letter will give the specialist essential background information, such as your medical history, and it will also contain details for the specialist to pay particular attention to.
If you wish to see a private specialist you are still advised to get a letter of referral from your GP. However, whether you see a private specialist, with or without a GP referral, or are referred to an NHS specialist, your GP is not obliged to accept the specialist's recommendations.......
I suggest always getting in touch with a registered charity in ref with the condition you have - THEY hold a lot of power and Information -
.......
THIS SET OF VIDEOS - SHORT - MAY HELP SOMEONE SOMEWHERE -
PLEASE BE AWARE THIS IS ALL BASED ON MY KNOWLEDGE AND MY OWN RESERCH AND UNDERSTANDING - NOTHING IS SET IN STONE !!
https://www.youtube.com/playlist?list=PLPXZS76BBaH4JD7Qtror3zovTDDyPWmYT
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