I don't have this so I can't help with it. Have you searched the topic in the chat forum? There are older posts on this. Hugs love and prayers for strength as you learn ways to help you cope with this! 🙂❤🙏🌼
Find a support group, f b has several. You will have to keep written records with you at all times, especially if you every have to go to an emergency room. Your body will have to be handled gently. I am not trying to scare you but you will have to teach your self all you can. Like my disease which is rare even an MRI can cause damage.