Have you heard of the NIH's undiagnosed diseases program (UDP)? I got the quotes below from this article.
http://nihrecord.od.nih.gov/newsletters/2010/01_08_2010/story2.htm
“We’re inviting anybody with an unexplained problem to make an inquiry."
To get into the Clinical Center via the UDP, patients’ medical records and summary letters from physicians are submitted and triaged to NIH specialists in related medical fields. Those specialists recommend whether to accept the patient.
Since May 2008, the UDP has received more than 2,300 inquiries and 900-plus medical records; 190 patients have been accepted, including 80 children.
Gahl said the top three criteria for inviting the patient to the CC for in-person evaluation are whether the case offers a “good clue to pursue, unique presentation and whether the patient’s family is involved.
I can usually get in really quick to get my test, its the follow up appt that is ridiculous. I can usually have my test done in under 2-3 weeks. It doesnt help either that he is also seeing my mom who he wants to run additional tests on her since she is far worse than me. I sure hope he isnt holding up trying to find out what is wrong with me cause he is also trying to figure out what is wrong with my mom. Esp since he thinks its probably genetic. So what could only woman have that is genetic that looks very much like MS? Since my pcp is still convinced it is MS unless it is something extremely rare.
The reason why people get so sick is because of the wait for tests.
In the UK it was horrendous about 10 years ago, but lately because of new guidelines the test appointment must be made within a month, and the results must be in quicker.
It does help a lot now that we can find out a bit quicker why we are ill.
I think too some of the problems are so specialized that even the doctors havent really got a clue.
I just wonder if we looked at one of these doctors computers how many things they would have on bookmark lol, like we do lol.x
Hmm. Makes me wonder if the doc isn't really expecting any answers from the tests. Maybe he just wants more time to see how you're doing in 3 months.
The MS specialist I went to had a minimum 2 month wait to a next available appointment. In order to get my vision tests done before the next appointment, it ended up being 3 months. I guess they figure we're not going anywhere!