Hi everyone,

I'm very curious as to how many Dr's have people seen in order to get the right diagnosis?

Saw my GP who sent me back to my original neurosurgeon, who did my Chiari surgery, who said it was not Chiari related, and sent me to a neurologist. He said it was definitely Chiari related and gave me Topomax. Four months later I was so doped up but still in such pain, I found another neurologist. Told him I thought it was TN, and he agreed. I only found this doctor by calling several neuro practices to see if they worked with TN patients. It can be daunting to find the right doctor, but try not to give up hope!
Best of luck

GP, to neurologist who said if I could touch my cheek it wasn't TN, sent to ENT 2 months of treatments for misc things, back to GP, back to neurologist.

I’m now being referred to a maxillofacial consultant. Seeing the dermatologist next week to find out what the lumps are n then I think I’ll be back to the neurologist who will then refer to a different NS. Oh the joys!

My pain started around the eyes so I saw three eye doctors. The third eye doctor sent me to an allergologist, the allergologist to a dermatologist, the dermatologist (by this time the pain had spread to cheeks and jaw) to the dermatological clinic of the university hospital, the dermatologist at the clinic to the head physician, the head physician to the neurological clinic and the neurologist sent me home after making me stand on one leg and touch my nose. Then my GP sent me to a naturopath, the naturopath to the dentist. Finally I read about TN on the internet and contacted the local self helf group who put me in touch with a specialist here in Berlin. It took me nine month to find the right doctor.

2 ENTs

1 Neuro-opthalmologist

1 GP (my pediatrician)

1 Neurologist


3 Neurosurgeons

I feel like I'm missing some... but either way, too many doctors!!!

It took me 2.5 years to find out what the etiology was.

I got the diagnosis of TN from an oral maxillofacial surgeon very early on. After that, saw a neurologist who diagnosed 'idiopathic' TN because my neuro exam was OK. Pain went away, recurred 10 months later, new neurologist, same 'idiopathc TN'. Order non-urgent MRI, that took 10 months to get (meanwhile pain, weight loss, laughed at by GP, found new GP, psychiatrists, GI specialists because of reflux and constipation, dentists), and MRI showed evidence of MS. Neurologist refused to believe I had MS, also didn't believe I had TN when I was able to touch my face but he never asked about where my triggers were and they were all in my mouth, so I had to find a new neurologist who specialized in MS. All he had to do was look at the MRI to find the lesion in my brainstem that caused all the pain.

Keep on searching until you find people who will help you.

12 doctors and 3 years. Plus monetary loss of nearly $200,000 counting medical bills and wages. Went from upper middle class to public assistance and hopefully SSD soon.

Just went to my GP and told him what I thought i had and he started me on tegretol a month ago-- spoke to the Johns Hopkins TN clinic and they said a gp could prescribe the meds-- if the meds work--great--if not the gp could get me a surgical consult with them. They said a neurologist was not neccessary--that a GP could work with me on getting the right meds! I had bad but intermittant "tooth" pain for almost a year--dentist said tooth ok-- but that escalated into a classic TN flair a month ago. so my diagnosis was fast...

Eight years and literally countless doctors. I was in a head on collision 10 years ago with a 5 year projected recovery so I thought it was part of the head injury diagnosis.

It’s still amazing to me that no matter how many GPs and neurologist, NS and various other people ive seen no one person actually has a clue of what’s going on. To me that’s just amazing as it goes to show just how complex our bodies are. But well get there in the end I hope.

Trying to stay positive. :slight_smile:

I diagnosed myself from google and was somewhat lucky that my family Doc had another patient with TN.After that is was a bit of a trip.I got set up with a neurosurgeon for the decompression.They found i had a AVM and passed me off for cyber knife.The TN came back horribly,so i ended up with another neurosurgeon for Gammaknife.Feeling good now,just wish i could get off the meds.Yes,stay positive.I know it gets difficult.