I'm so sorry for your family's pain. I looked at your profile to see where you live. I live in Dallas, Texas. I to suffered for about two years no doctors could tell me what was wrong or what to do. They began to look at me like I was crazy. I was passed to seven doctors and admitted myself to the ER on three different occasions. Finally the last go around they sent me to Dr. Scott Zashin he is certified in Internal Medicin and he is also certified in Rheumatology. Dr. Zashin changed my life. I am now a normal person after seeing him for only two months. This doctor does not give up, he has the best bed side mannor that I have ever seen. I hate to say that I have no trust in Doctors but I don't. Dr Zashin has my trust he is by far the best Doctor I have ever gone to, he was not coverd by my insurance however I continue to pay to see him until I could change to a PPO plan. He checked me for Addison's. If at all possible I hope that you can go to Dr. Zashin he is rated #1 in Dallas by D Magazine. Please type in his name and read about him. I wish you and your family the best. I know from past experience that there is nothing worse than to watch someone you love suffer. God bless you and your family you will be in my thoughts and prayers. By the way he is affilliated with Presbyterian Hospitals of Dallas and Plano.
I am sorry for your frustration. You need to look for an alternative health provider who specializes in auto immune diseases. There is a great body of information on helping these people. Cure, no. Once the body has "turned against itself" aka auto immune disease you can not cure it. However, you can control the physiology of the immune system and make that persons quality of life a whole lot better. Albeit they will have good and bad days. I am a Chiropractic Physician, one of those "Oh" Dr's. I have a significant education in treating the human physiology. As our food source gets more contaminated our our environment more polluted we will see more and more auto immune diseases and Western Medicine, although they do have their place, can only treat auto immune disease by using steroids. Suppress the immune system at all costs. This only makes things worse but when you treat the symptoms and not the physiology this is what you get.
Good Luck
Seek the #1 physician, and that is Jesus. My mother was also diagnosed with Lupus which leads to the deterioration of many other parts of the body as it fights against your own immune system. This caused signs of Addison's disease as well, but she has found Christ, and it has literally changed her life. She prays, meditates, attends church regularly, studies the word, and most of all she has faith in God! Praise God, she used to get emotional and was literally deteriorating in front of us with her muscle weakness, excrutiating pain, mood swings, memory loss, depression, fatigue, feet cramping, hair loss, skin pigmentation, etc but now she is doing well. She changed her way of living, by putting God first and eating and living right. Tell your mother to stay away from fatty foods, fried foods, caffeine, flour products as it can have a bad effect. She can take injections or tablets weekly for Addison's disease, which really helps. Most of all, seek the help of the Lord (you have nothing else to lose, all you have to do is seek and you shall find). God Bless You!
Kennedy Krieger Institute is affiliated with Johns Hopkins in Baltimore. They deal alot with the dystrophy-based diseases and run clinical trials all the time.
If you go to their website, don't put alot of weight on the fact that it seems centered around children and adolescents. They do deal with adult patients also...
http://www.kennedykrieger.org/kki_2nd_inside.jsp?pid=3
Addison's can usually be controlled with a regiment of corticosteriods. Good luck!
I am so sorry for all that you and your family have been through. I would just recommend getting second opinions or just don't leave the Dr office until you are happy with there answer.
Good luck