Last post Tue, Mar 25 2008 6:58 PM by Nightengale. 1 replies.
How many of you have dealt with either mis-diagnosis or a "missed diagnosis" due to dealing with more than one disability and ALL your symptoms/problems/complaints being blamed on the 'initial diagnosis' when in fact you had MORE than one issue going on?
I assume this is a common problem, correct? especially when you are dealing with complex disabilities to start with?
If you did, was it months or years before they figured out the "real deal" with your medical situation? How did they eventually figure it out? Or are they still 'working' on solving the complex mystery of you?
I've definitely had some delayed diagnoses, most notable is cerebral palsy that was finally identified at age 28.
It's not clear that any of my other conditions led to the delay, so much as the mild and atypical presentation, and the fact that there was no push in my childhood to seek a diagnosis. When I finally sought one on my own I was already 21 and adult neurologists were not prepared to think about pediatric diagnoses.
My chronic hip pain was originally diagnosed as bursitis that was expected to resolve completely. In retrospect its not clear if I have bursitis or not but there are clearly mutiple factors including the then undiagnosed cerebral palsy causing me to toe-walk. The latest diagnosis is myofascial pain and while this doesn't explain everything 100% I am comfortable with this label. Basically I am satisfied we have ruled out all treatable causes and that is enough for my piece of mind.
Then there was my asthma which was labeled as "stress" by student health, and my intermittant tendonitis that was not diagnosed at all by the fancy hand specialist but immediately recognized as tendonitis by my young family practioner 8 years later. (The fancy hand specialst only told me it wasn't carpel tunnel and then said I should go out to parties to solve my hand pain. Never did tell me what he thought it was. Responded very badly when I said I hated parties)
