Posted by Karen B.
on March 23, 2000 at 01:41:07:
In Reply to: Living with Addison's for three years.......... posted by Rhonda Deal on March 02, 2000 at 13:26:14:
I just found this board, and have been thrilled with all the different boards on Addison's. I've had Addison's for 28 yrs. I'm 45 now , but was around 17 when I was dx. My illness was finally dx after two full crisises . Once in a coma for 4 days. Once in a coma for 11 days. those were very scary times, but my life is pretty stable now ,except for aches and pains which of course no on knows what they are.As far as the medical feild out,there goes it is hard to get the proper treatment. I've had to teach many a doctor about Addison's .It does get very frustrating to go to someone for help, and you know more about the illness then they do.There are also some very good endos, but they are hard to find. I finally was sent to UCLA medical center to get my meds changed and myself stablized. Hang in there until
you get stablized. there is life after Addison's. Also don't be afraid to tell the doctors that your sick of how you feel! If they don't know what to do, then they should send you somewhere, where there is the proper medical treatment. I was made a ginnypig for a year after dx. No thank you!
Take care All!!
: I was diagnosed with Addison's after a severe crisis in August of 1997. The initial tests were positive. After seven days in the hospital I was retested, this time the levels were low/abnormal, but not positive. My GP put me on florinef .1mg per day to sustain a fairly low/normal BP. For two years, one doc said yes, another would say no. One would give me meds, and another would take them away. After a lot of close calls and miserable days and nights, another GP put me on florinef .1mg per day am, and 20 mg. of cortisone am, and 10mg. of cortisone in the afternoon. I have since gained about 20 pounds, which I have no problem with, but I am not feeling better, if anything worse. I get sick so easily, and so severely that I have to rely on other people to take care of my two children, a 4 yr old boy, and a 10 yr old girl with cp and epilepsy. If I go to the er with a problem, I generally have to diagnose and treat myself to survive the visit.
: The lack of care, and education among drs about addison's is scary.
: I would like to list my symptoms, and if anyone out there can relate, or give me some tips on how to make people understand that just taking meds keeps us alive, but not exactly well would be greatly appreciated.
: This is a long list so please bear with me.
: spiking high temps with or without vomiting
: unable to tolerate heat
: always cold
: stomach pain
: joint pain
: vision loss/reduction
: unrestful sleep
: Then there's all the wonderful side effects of the steroids, leg swelling/cramping, osteoporosis(wich has been scanned and confirmed), symptoms of estrogen depletion(even on supplements), terrible PMS, anxiety(wich my gp will not give me anything for), no social life because you are just too tired.
: Please let me know if anyone is out there that feels like I do.
: Bless you all,