Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
i went back to work for 3 weeks as a cleaner and i soon felt my symptoms more. i went to the doctors and he has told me not to go back. he also said that i can no longer work as i get very tired quickly my legs and arms are very painful when used alot. and severe back pain to add to the list. im wondering what i can do now? we need money and i just dont know what to do as i cant work anymore. any advice would be very gratefully recieved x lisa
deleted_user
How long has it been since you had an MRI some of these tumors grow faster that others and all the symptoms you told me about sounds like yours maybe bigger that you think. MY doctor said your tumor is pretty big before it affects your vision because that happens when it is pressing on your optic nerves. I hurt the same way you told me about until I had my surgury and my pain stopped almost immedently. I could only do a few daily chores and I hurt so bad I had to lay on a heating pad at the end of the day.
J0KEYJ
I do think Debbie 125 has offered some good advice on this about your tumour, have you had a field vision eye test,but so you dont suddenly panic The hospital you are at is very good I know im there as well but I think flouncys on tablet form I am drug but it took a few attempts and checking before it made a difference.As to working no person is ever the same and yes this condition can really make it hard for some to go back to work and what treatments you have to have.I am selfemployed which means I can work a bit better around my hospital trips and my son who homelearns.I think a call to the benefits agency may help who can advise.JJx
flouncy
thank you, the last time i had a scan was the summer last year, so i dont know when i should be having another one. i have tried disabillity allowence as my doctor advised but they refused my application. so i think i might try a call to the job centre or benefits again. i had a field eye test a coupla of weeks ago and they said that my vision is fine. thank you for your advice x xflouncy
J0KEYJ
I know that the hospital we are with wont hesitate if your tumour was really close to the optic nerve they wont mess around.It did take some time with my drug dose and they are happy.I am not against surgery for some people this is maybe the best route.For me not.I think we have a condition that loves to be the boss and is quite a bully whatever treatment we go for its a battle and we are not on an easy road.I think people dont realize how hard it is for us we have alot of things we have to deal with not just a tumour.I think even with surgery.I have meet someone who has no tumour and has been bad with acromegaly.I think people who cant work should not have to worry about money we have so much to deal with.But lets hope the benefits agency could help JJx
flouncy
thank you. for all your advice x x i appreciate it. x
spiegal
Hi, Have you tried applying for long term incapacity benefit? this is given even if you do work. We have just been awarded this.
flouncy
believe or not i actually just claimed for this yesterday and they said it will take 2 weeks to go through . the man on the phone said that he thinks i will beable to claim. so i guess thats just a waiting game now. will let you all know how i get on. thank you for your advice x x
deleted_user
I had a visual fields test done my tumor was pushing on my optical nerve. After the surgery it was not as bad.
flouncy
its no go on anything.so i hope that the doctors can sort my arms out. then i can get back to work, even if its just part time.
Join the Conversation