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.
have another MRI scheduled for in the morning. My primary care doctor wants to see what's going on. For the past 4 months I've been plagued with sever headaches that have now progressed to everyday and lasting the major portion of the day. Sunlight and bright lights tend to set them off and make them worse........the only way I can deal with them is to just isolate myself from light and keep my eyes closed, which makes working on the computer pretty much a thing of the past.........most of the day is spent wearing my sunglasses even inside. Of course when the headaches hit I've also noticed a notable drop in coordination, greater fatigue and a distinct drop in the cognitive skills.
At first he thought they might be migraines. But they don't come on fast enough.........it's more a slow build up that ends up with the headaches.
He's worried that the tumor maybe growing again around the optic nerve. The original surgeries didn't get all the tumor tissue, due to the fact that the tumor had grown around the optic nerve and was pressing on the carotid artery. Combine the headaches, which seem to be from optical fatigue, the previous location of the tumor and the rise in my IGF-1 levels (doubled) and we need to see what's going on......
I'm thinking it's time to get the lawyers working on a disability claim. Anybody have any success getting disability with Acro......
At first he thought they might be migraines. But they don't come on fast enough.........it's more a slow build up that ends up with the headaches.
He's worried that the tumor maybe growing again around the optic nerve. The original surgeries didn't get all the tumor tissue, due to the fact that the tumor had grown around the optic nerve and was pressing on the carotid artery. Combine the headaches, which seem to be from optical fatigue, the previous location of the tumor and the rise in my IGF-1 levels (doubled) and we need to see what's going on......
I'm thinking it's time to get the lawyers working on a disability claim. Anybody have any success getting disability with Acro......
I have been through absolute hell for a solid year but have finally heard, thanks to my psychologist, that I have been "medically approved" for SSD & this is on the FIRST application without the help of an attorney so I do not have to share any of the "pie" with anyone. From what I've heard, it's fairly rare to be approved the first time through & a person usually has to hire attorneys & go through at least one appeal process, so I'm feeling extremely grateful. Now I need the same good fortune in the most intense way with the disability retirement or I'm going to have some serious problems with health insurance & the financial crunch will still be fairly tight although after going since July with NOTHING, having anything at all is going to be a great relief. So the answer to your question is YES! I have finally had some success & I know of 2 other persons who have a more complicated form of acromegaly (MENS) who were successful in winning cases for disability.
I know that Topamax is crucial to my relief from headaches & Relpax from breakthrough headaches when that doesn't work, but at the moment the IGF1 is in normal range & the MRIs are showing the remnants to be in control.
I hope that you are able to find some answers & some relief.You have been a great inspiration to the rest of us over the years & it always hurts to see anyone suffer. I hope you'll be able to keep us informed of your progress because there are a number of people here who are concerned for you.