Why Is Getting A Rare Disease Diagnosis So Difficult?

The following is an excerpt from about .com. Recently I was asked if I could recommend a doctor for someone. This prompted me to start looking.  I did go to the Mayo Clinic in Rochester, MN in 2007. 

I saw a specialist there who ordered some tests which indicated "Menetriers" disease.  The VA unsuccessfully tried to verify this diagnosis.

I had a upper-GI (EGD) endogastric duodenoscopy, as well as a few other tests.  I can't remember that doctor's name.

I came across the following article that I think explains some difficulties we have when trying to get a diagnosis.

It can be a long, frustrating process
From
Updated August 21, 2009
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You have been waiting forever to see a specialist
It’s difficult to get an appointment with some doctors, most of all those who specialize in rare diseases. It may be 3 to 6 months before you can see someone who has a heavy schedule. It can be disappointing to wait a long time only to be told that they’re not sure what you have or that they want you to go see another specialist.

Telling your story was easy the first 50 timesI know a mother of a child with a rare disease who has typed up some pages explaining what her daughter’s disease is, her medical and surgical history and her current medications. The mother hands copies of these pages to each new doctor who examines her daughter so she won’t have to repeat everything yet again. You may feel as frustrated as she does, having to give the same information many times. It may seem as if the doctors don’t read your chart or look at your test results. Seeing new doctors adds to the stress of getting a diagnosis.

CLICK HERE FOR FULL ARTICLE!!! It is very good.Mary Kugler, R.N., former About.com GuideMedical Review Board