For those with autoimmune or neurological disorders-how long did it take to get !
Question: For those with autoimmune or neurological disorders-how long did it take to get your diagnoses?
I have a rare genetic disorder known as atypical myotonia congenita, a potassium-aggravated myotonia. I had severe symptoms for 13 years before diagnosis, but actively pursued an answer for about 8 years before I got one. The first 6 of those years were spent with doctors running the same standard blood tests and shrugging when they came back negative.
A fabulous GP, open-minded neurologist, and excellent university specialist all helped me get my eventual diagnosis - but it took ages to find these doctors. I really think there's an epidemic of dismissive patient treatment.
So how long did it take you? Did you have to put up with doctors who told you your problems were caused by anxiety or depression? Did you have to push for the right testing, or seek out other doctors?
Share your stories, please. The long version of mine is here:
http://www.associatedcontent.com/article…
Rare Disease Day is February 28.
Thank you, and let's make some noise!
A fabulous GP, open-minded neurologist, and excellent university specialist all helped me get my eventual diagnosis - but it took ages to find these doctors. I really think there's an epidemic of dismissive patient treatment.
So how long did it take you? Did you have to put up with doctors who told you your problems were caused by anxiety or depression? Did you have to push for the right testing, or seek out other doctors?
Share your stories, please. The long version of mine is here:
http://www.associatedcontent.com/article…
Rare Disease Day is February 28.
Thank you, and let's make some noise!
Answers:
2 years and still searching for a diagnosis! i have had a headache everyday and it is affecting school ): Wahhh! Doctors dont seem to try hard enough to find the underlying illness answer mine please! :)