I just wanted to comment and say that I have noticed that the one thing all of these mystery diagnosis cases have, is badass docs. Every case seems to end in a story of an amazing doctor and how they believed in the patient. They run tests and seem to be relentless in working for each person. There was an example where a doctor was explaining how he was sitting there going over and over a patients case unti he discovered something. I just want to say bravo! I have dealt with a mystery diagnosis of my own now for 10 yrs and it is still undiagnosed and I am positive that of the hundreds of doctors I have seen, not ONE of them has sat at thier desk going over and over my case. Amazing. Just knowing there are doctors like these in the world gives me hope. I have a dream to one day meet one and be heard and not brushed aside.

I just joined and read your posting. I have to echo your sentiments. I have been diagnosed..."misdiagnosed" for 30 years. Every doc I see says the other was wrong and nobody can say exactly what is wrong. I too dream of the day somebody will care enough to really try and figure out why at 53, my bones are like people who are 80, have chronic severe back leg and foot pain etc etc....I'm sick of being sick.

I, too, just joined. I, too, hope some dr will diagnose me, as I know something is really wrong w/me. I have had worsening symptoms for 2 yrs and my family thinks it's all in my head. I, too, applaud drs that keep on trying when a patient knows somethings wrong, but tests show normal. There's a test they just need to think of & keep trying.

Doctors often will either 'group' or put all the symptoms together, and if one diagonsis is possible, even thou other symptoms are present they ignore them. Very few doctors try to weed out why EACH symptom is happen, it probably is way too money. Unforuntenly, by the time doctor decide to do this, it may be too late to reverse the symptoms... But at the same time if doctors do lok at each symptom you may have a million different diagonsis, and unfourently on the third hand you do have the fact that many of the symptoms do present themselves so therefor making the actual diagonsis is extermely hard...

Take it from someone who is eventually going to have sat on both sides..

I'm with all of you too. I just joined on behalf of my 28 yr old sister who has been misdiagnosed with everything from auto immune diseases, MS, Lupus, Cancer to "I'm sorry we just don't know for sure". It has been over three years. She has seen half the Specialist on the East coast and spent over a week at the Cleaveland Clinic in Ohio. My family and I don't know what else to do. My thoughts and prayers are with all of you and your families. If anyone finds these doctors...PLEASE let me know. Thanks!

I just joined and read everyone's postings. Everything is true that everyone is saying, but there is even another problem. I'm sure like many of you I have have had 100's of doctors visits and no diagnosis. Part of the problem is that they send you to each "specialist". The specialist can not find anything, but each specialist still prescribes a medication to help one of the symptoms. Your still left with a symptom or symptoms, which the medication mask what is really going on. Or you tell them what is wrong and they send you to a psychiatrist. I have not only been with a undiagnosed sickness since the gulf war, but there still has not been anyone that has took the time to really find out the true problem. I'm so confused if it could be a parasite or some kind of mystery diagnosis. But, I will say that there needs to be a list of doctors that are good enough to solve mystery diagnosis problems. I'm not talking about doctors too bad, but if you can not solve it then let a doctor who really can solve it. The real problem is that the medical community needs to realize that there is a big need for a specialized team of doctors that work together to solve these kind of cases, instead of putting patients through years of pain, suffering and even death. I wish everyone well and if anyone knows of someone who specializes in unsolved mystery diagnoses please inform me and everyone. Thanks!