There are some points I would add:

6. You may not get an accurate diagnosis or accurate treatment from the first doctor(s) you visit. Not all doctors know everything about their own speciality, nor do they know when to say "I don't know". Which leads me to 7:

7. You may even be dismissed by doctors who don't know, can't say they don't know, and don't want to be bothered by a 'complex patient'.

8. You may have to fire several doctors (or kiss a lot of 'frogs', as it were). The is time consuming, exhausting, costly, and YOU are the one who is sick and doesn't have the energy for this, in the first place. We all just want to throw ourselves on the first medical professional we meet and hope for our savior. It just doesn't work this way most of the time. Prepare to be BLAMED for whatever is going on!

9. Seek out medical treatment from a major medical center with a medical school and a teaching hospital. You are more likely to get the proper diagnosis and treatment (if there IS treatment) in that setting.

10. Seek out a community of those with your 'condition(s)'. You may have to shop around, all communities are not the same. Since you may have a 'rare condition' your community will more likely to be on line.

11. You will have to keep the records, coordinate your care, educate your helpers, and generally direct the show. Keep a daily diary so you can back track to pinpoint exactly what changed or what developed. If you're lucky you have someone in your life to help with all of this. That person should go to all appointments and tests and treatments, and stay with you in the hospital.

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