I need some direction, I don’t know what to do now. My Neuroglist said there was nothing on the MRI. She doesn’t think it’s neuoroglical, but did ask me to get blood test and clavicle x-ray invade there is any arthritis. I think dhe was just trying to please me. I have tried to tell her I do not want to take medication to cover the pain, I want this gone. Should I look for a different kind of doctor? If I call other neuoroglists and ask what there experience is with TN, will they tell me and visit them? Are there any other tests to show TN?
Hi Darlene,
There are no diagnostic tests for TN. MRIs are done to eliminate other causes like MS or tumours . So having an MRI that shows nothing is GOOD.
Diagnosis is made by patients description of pain and usually how one reacts to Tegretol ( carbamazepine ). If you start to get relief from this med within 48hrs , usually means its TN. Not everyone can take Tegretol though, so then other anti-convulsants are given like Neurontin.
All anti-convulsant meds take time to build up in our bodies, so you need to give them 4-6 weeks all the while adjusting the dose to get to a therapeutic level. For tegretol the therapeutic level is usually between 400mg-800mg.
We all react differently to othe meds…
Medication can eliminate or greatly reduce the pain, since there is no known cause only suspected causes, there is no cure…yet!
My best advice is read ALL you can on TN, perhaps get the book “Striking Back”.
Find a neuro who is very familiar with TN, or at least one who is supportive and willing to learn .
Again, no tests will show TN.
I hope you find relief from your pain soon.
(( hugs )) Mimi
Thank you for responding and all the info!
Was the mri ordered with contrast also called an mri/mra. Did they inject something into your vein when you were getting the mri done. If so this is the mra part and will more closely identify the vascular component of TN and if it is in fact compressing the nerve or not.
Yes they did. I was trying to stay away from taking tegretol but now after reading more here that if it works that’s more of a sign that you have tn. Do this week I’m going to look for new doctor that has more experience with this.
Try finding a TN specialist in your area. Use the doctors guide on this web site. This is not hard to diagnose. I found a neurologist and two nuerosureons and all had the same guidelines for diagnosis. Pain control through meds is the first options you will be guided towards. I have gone through three and am now setting up for a MVD surgery. Hopefully you don't have TN but second opinions are your best options.
Thank you Dolphin. I am waiting to hear from second neuoroglist to schedule appointment.they requested my records from 1st doctor.
Hi Darlene, I had several MRI’s with contrast, nothing showed up, but had 3 nerves compressed. Dr Casey said the nerves are too small to show up on even the best MRIs. A clean MRI with TN pain is basically telling you that you do have TN, not MS or a tumor, but most neurologists don’t know this. My neurologist from Mayo told me I didn’t have any compressions because my MRI was clean and that “surgeons see what they want to see.” Luckily I pushed for a MVD and am now pain free to very minimal pain on my operated side, actually no pain on that side in several weeks, just keeps fading away:)