Here's some advice for anyone suffering from an illness that is difficult to diagnose.
If you want to read more on this please go to http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=66477984&blogId=382323976 and read my blog on mystery illness.

1. Try and get someone close to you to accompany you to each doctor’s appointment if you can.
2. Learn to be assertive and try not to lose your temper if they don’t please you.
3. Get photocopies of all tests and reports you’ve had done since you’ve been sick as often the specialist might not get them or as in a case like mine a doctor wrote a load of nonsense on my report.
4. There is a show called Mystery Diagnosis that is very informative. They also have a website and message board where people try and help each other.
5. Tell people what’s happening as they might know of a doctor, clinic, procedure or website that could help you. Unfortunately you might get people thinking they can diagnose you and they’re wrong, but convinced they’re right and trying to force it on you.
6. The best websites I’ve found are the Mayo Clinic and Wikipedia, if you can understand it.
7. Try a naturopathic doctor. It didn’t help me, but helped my husband a while ago.8. Most of all, BE PERSISTANT! It might take a long time to be diagnosed but you have to keep pushing.

Here are some useful websites;

http://www.ratemds.com/social/
http://www.cpso.on.ca/docsearch/
http://community.discovery.com/eve/forums/a/frm/f/5241904768
http://www.healthboards.com/boards/index.php