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'm a 62 year old mother of a 27 year old who was diagnosed with Acromegaly in August of 2016. My son's pituitary tumor was removed in September of last year. Despite every treatment, my son never really got back to his "normal life". He even lost his job as an engineer due to prolonged disability. In the past 6 months, his headaches and neck pain got so severe that he would inject himself with Octreotide every hour, 24/7. This is on top of the Somatostatin LAR injection that he gets once a month. He'd be lucky if he can get 2 hours of uninterrupted sleep. Unfortunately, it is still an ongoing problem. Our frequent trips to the Urgent Care, MD office, procedures to alleviate neck pain and headaches seems to be the new norm . I've been trying to find a live support group for him in Los Angeles but have been told that they are not that active. I know he has joined a support group via Facebook. In the meantime, my whole family, especially myself also need help. Does anybody know of a support group for parents of children with Acromegaly? Can you ask your parents? Your response will be greatly appreciated.....
By the way, my family also pray a lot.
Taking care of an ill family member is hard on the whole family. There are many layers of frustration and exhaustion. The emotional drain can literally kill you. I have taken care if two parents and one sibling. It is brutal. find a caregivers support group. Important: Find time to take care of your self! You are no good to any one if you are ground down to nothing. I hope this helped.
If your son is incapacitated that he can't work you should go and apply for disability and all the social services you can get. If they say no keep appealing and re-filing. Your son paid into that pot it is for him to use. you might be able to get a home aid or nurse to help him and relive some pressure off of you.
What are your sons hgh levels at? Igf1? A1C? He could also have an imbalance in his blood that is causing him pain, think hormones or salts. you would be surprised what can happen if your blood gets out of wack. Another though might be an imbalance in his female hormones. the Pituitary controls that stuff. Like a super PMS that he has no reference for and isn't cycling like a normal menstrual cycle that women get.
I have always been the example or the exception in my life for good or bad. Therefor i don't rule out anything no matter how far off it seams. Sherlock Holmes said "rule out the impossible and concentrate on the improbable."
Let me know if this helps. Hang in there. This is only one round. you are doing a great thing fighting for your son. One day at a time will get you there.
May you be blessed with all the best things in life!
My mother suffered from Glaucoma and every eye specialist, after looking at the papers, raised his hands. But at an upcoming eye institute, a junior doctor told something brilliant. "Get thorough analysis done, from stage 1. Don't tell them what you suffer from and see what results! Would you believe, she did that and the same doctors who refused treatment earlier, guaranteed 75% vision!
There is another branch of medicine which treats symptomatically. It does not count the disease as one, but is very much helpful in countering various symptoms. (Ironically, this branch is banned in the US). I have two instances: 1. Wasp Sting and 2. Root Canal because of infection in tooth. NO painkillers worked to kill the sting pain and same with tooth problem. But one single dose was enough to ease me out. In 4 days, all the pus in the tooth oozed out and I saved myself from drilling the teeth. (BTW The branch is homeopathy.)