My Mum has been dealing with this all her life. Originally she thought she had Lupus, as one of her Aunts has this.
The disease seems to have accelerated it's attack in the last 3-4 years. She is now having trouble swallowing, as she has had to have vitamin B injections for about 2 years and special shakes instead of food.
On the plus side, if there is one, it seems to be leaving her other organs alone at the moment.
Apart from the shakes and vitamin B the doctors don't seem to be giving her anything else. My Dad seems to think immune suppressants would not be a good idea. but after reading an article on the John Hopkins site about Dr. Frederick Wigley I wonder if this isn't a potential way to reverse some of the damage.