why is it that your neurologist or like me even my muscularneurologist have me take these tests then see them in 3 months? We wont ever get a dx if i constantly have to wait so long to see them. Even after the muscular neurologist said this is probably gonna take us awhile to figure this all out. He is also just started seeing my mom who he wants her to have a emg then a muscle biopsy. I am falling further and further apart faster and faster and it just seems stupid to wait so long. They know when I leave their room I go to the front desk make my appointment for my test and then the follow up, why not have me make my appt for return visit 2 weeks after the test. I am just so mad at this taking forever.
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!
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.
Have you heard of the NIH's undiagnosed diseases program (UDP)? I got the quotes below from this article.
“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.
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