Hey everyone,
this site is so inspiring and totally what i needed. Ive reached the point where i dream of having cancer or something awful so that someone can explain my symptoms. Thats awful isnt it.
A basic list of my symptoms is:
non epileptic seizures
tremors and jerking
migraines
nausea and vomitting
diahorrea
hot flushes
lactating
loss of peripheral vision
trouble sleeping
high anxiety
increasing body hair
increased weight gain
erratic periods
iv had these symptoms since i was about 19, out of nowhere i just became ill every day. Ive noticed a lot of people on this site have food related problems , i guess its an area where so little is known about the bowel that we often get lumped with diagnosis like IBS which is really just a description of the symptoms! Ive had MRI's , EKG, EEG, heart echoes, endoscopy, colonoscopy (bloody hell theres a loss of dignity right there huh!!), barium meal test, vison field tests , every kind of bloomin blood test! Most recent has been the lactation (joy! gotta love a bit of foreplay with milk coming out your boobs! a real turn on lol) which has given cause for concern about a pituitary tumour, i saw an endocrinologist thursday who is doing some bloods but as i had an MRI done in may is sceptical about doing another, although i can tell you i will be forcing that on him! Its got to the point where i came out of his office after a slightly less productive meeting than hoped for, collapsed in tears on the floor and a lady came over and asked me if i was ok, she was slightly shocked when i described that i was upset because i might NOT have a brain tumour lol. although i guess that may be something people here can relate to? People thinking your crazy for wanting a diagnosis even if its a bad one, The way i see it is its the same symptoms so its just the label and the potential for pain relief!
This site is an incredible idea, i dont know about anyone else but after a few years of being ill (particularly at my age when your friends want to go clubbing not collect you from the bathroom floor surrounded in your own shit!) people dont want to hear about it so much, nothing gets easier for you and nothing has changed but people become less sympathetic. Its hard to get sympathy when you describe a cluster of symptoms and not an actual illness, i feel sick sounds different to crohns disease for some reason! this site seems likes a good place to sound off and feel a sense of togetherness with people.
I wondered if anyone had any good approaches or techniques for managing their symptoms and their life? Ive decided that whilst i will continue to battle on in search of a diagnosis i dont want that to be my only source of relief, i want to help my body be better, to teach my friends and family how to cope and deal with me (particularly my boyfriend who swings between being adored and hated by me!), to learn how to accept some of the restrictions of my life and to get control of it. Some people here have been managing these symptoms for years and i am in awe of your strength, i greatly admire you. I imagine you will have developed some techniques for managing things , could anyone give me some tips?
Lovely to meet you all, Hannah
