Hi All,
I'm new to this site and it's already been so helpful. I'm curious if my experience has been typical and would be interested to hear how getting a diagnosis went for other people. My pain came all of a sudden in March 2012. At first I thought it was dental but then it gradually spread up the right side of my nose and face. Over 18 months I saw several dentists including an oral surgeon, several primary care doctors, an ENT specialist, a naturopathic doctor, an allergy specialist and finally a neurologist.
I was told over that time I might have had: lyme disease, burning mouth syndrome, an autoimmune disorder, food allergies, it was just all in my head or anxiety, systemic yeast overgrowth, complex regional pain syndrome type 2. I had many blood tests, all were normal. The worst was just getting the blank stare or being wished good luck every time I left a doctors office. Eventually I found a primary care doctor who listened to me and understood the pain and then I saw the neurologist. To be fair, I was offered a few meds over this time of searching, but I didn't want to take pills for an undiagnosed illness - and I'm also extremely medication sensitive.
My question is - is my experience typical? I have atypical TN. Even though this is obviously something no one wants to find out they have, I felt relief knowing that finally a doctor knew what was happening to me.
My daughter has been a nurse for 5 years and she says she's never had a patient diagnosed with TN or ATN. My journey has been informative for her, she hopes that maybe one day she'll be able to help someone else with this disease get correctly diagnosed.
If nothing else, my experience has made me hope this hasn't happened to other people. It was financially draining, frustrating and scary. Being in pain and not knowing why for that long - I wouldn't wish it on anyone.
Happy New Year to everyone!