Do I really have TN?

I have symptoms mimicking conditions but tests always prove I don't have that them. As an example, with my postpartum exhaustion for 10+ years the doctors have thought I had narcolepsy and sleep apnea. The sleep studies (I've had 3) don't show anything more than snoring. I still haven't found a cause or treatment.

With TN I entered the symptoms into WebMD's symptom checker. I looked through the different conditions and thought TN was the closest match. I contacted my doctor's office with my symptoms and TN. My doctor agreed I needed seen but he wasn't available so they set me up with an appointment with another doctor in the practice. This doctor talked to me, asking a lot of questions, and made a clinical diagnosis of TN. She sent me to the lab for bloodwork and consulted with a neurologist who agrees about the TN. A prescription was called in for Tegretol and I'm to have a MRI.

The more I read about TN the more I'm wondering if this diagnosis is right. I've had neck stiffness for years, one time even to the point I couldn't move. So now, after looking at the facial pain info on this site, I'm thinking my pain may be Category 3 with the TN and neck stiffness being related. Whatever is causing the neck stiffness is also putting pressure to the Trigeminal nerve.

Has anyone else experienced something like this?

If the Tegretol works, that is your best indication that it IS trigeminal neuralgia. MRI doesn't always show anything, but they need to rule out tumors and MS.

i have bad problems with my neck too but the face pain started first in my teeth

Is there ever a case of Tegretol easing the pain and it not being TN?

Donna Cook Turnage said:

If the Tegretol works, that is your best indication that it IS trigeminal neuralgia. MRI doesn't always show anything, but they need to rule out tumors and MS.

has anyone ever mentioned Chiari Marlformation? It took my daughter years of suffering before they fgured it out. Some people have severe Sx with little dipping. Some Dr. won't take seriously unless you have a dip of at least 5mm, but my Daughter has a dip of 3mm and some days could not walk. Check it out... I have NO idea if it has any connections to TN as I am new this world. Good Luck!

What's a dip?

Izzygma said:

has anyone ever mentioned Chiari Marlformation? It took my daughter years of suffering before they fgured it out. Some people have severe Sx with little dipping. Some Dr. won't take seriously unless you have a dip of at least 5mm, but my Daughter has a dip of 3mm and some days could not walk. Check it out... I have NO idea if it has any connections to TN as I am new this world. Good Luck!

I think the “dip” being referred to is the length of which the brain is slumped into the spinal column. I only comment on this as I too have a Chiari Malformation.