Confusing & Frustrating First Neurology Appointment

1

I had a strange neurology appointment today. And I wanted to see if anyone has experienced something similar.

I have been experiencing facial pain since mid-March. My pain is mostly dental, but I also have pain in my cheeks, jaw, side of nose, behind my eye, and below my ear. But since the vast majority of my pain is dental, I started this journey at my dentist's office. From there, I was shuffled around dentists and medical doctors until I finally found an oral surgeon who seemed to have an answer. He said that I have a bad bite, and that orthodontics would fix my pain. So I saw an orthodontist, who agreed that I have a bite problem, but suggested that I may also have a neurological problem. He advised that I see a neurologist.

After a 3 week wait, I finally saw the neurologist today. I was so nervous leading up to this appointment. I had put so much energy into it before I even got there. So I was dismayed to have the experience I did.

My neurologist quickly pronounced that my pain was not neurological, because I have throbbing and aching, which are not neurological pains. I reminded her that my orthodontist suspected that I have two problems happening at once. And I told her that a large portion of my pain is burning pain, along with electrical zaps, numbness and shooting pains. But she dismissed the idea right away.

She offered an MRI, but then tried to dissuade me from doing it. She said that it could show some unrelated problems that would require follow up, and not have anything to do with my pain. I was shocked that she would see that as a problem for me. Why would I care if there was something else on the MRI? I can't continue to go undiagnosed!

I asked her if I might have ATN or nerve damage. She said, "Oh, atypical facial pain? You could have that. But I wouldn't treat it." It was almost as though she wasn't familiar with ATN.

So I asked what I was supposed to do. And she said that I should see a pain specialist or just go back to my GP.

Then I asked what I was supposed to do about the pain. (I've seen 10 doctors now, and have yet to be treated. I'm at my wits end.) She looked at me with suspicion, like I was just a prescription pain medication junkie.

Has anyone else been dismissed out of hand by their neurologist? I know that I have two problems, so that might make me a special case. But I just couldn't believe how unproductive this was. I really expected to get somewhere today, and to be starting the process of finding relief.

Now, I don't know if I should find a new neurologist for a second opinion, or if I should just find a pain specialist. I'm confused, exhausted and frustrated. And I could use any advice anyone has for me.

2

Hi Karen, I am so sorry for the bad experience. Unfortunately it is so often made to be that the patient has to prove their condition.

I would suggest that you have your MRI and ask for the results from that before you seek another neurologist. If you scroll thru the tabs at the top of the page you will find a list of doctors who are familiar with diagnosing and treating TN.

All the best and do not be hesitant to advocate for yourself.

3

First neurologist I saw told me I did not have TN, and prescribed Topomax, which was useless. It took me four months and a LOT of phone calls to find a neurologist who diagnosed my TN. It can be difficult, but sometimes you have to keep going until you find the right doctor.
Best of luck to you. I hope you get to the right doctor soon.

4

Wow-- sorry to hear it went so poorly. When I had my first attack which was also dental- I went to my dentist and he said my teeth were fine. Next, I went to my GP with info I had found online about trigeminal neuralgia and he agreed that was it and started me on tegretol. I immediately called the John's Hopkins Trigeminal neuralgia clinic for advice(one of the foremost in the country) and they said I should get an MRI with the trigeminal neuralgia protocol and that my GP could send me for it. They also said the meds usually work and there was no need to see a neurologist unless the meds did not work. Tegretol worked wonders for me and I have been in remission for almost two years! Hope this helps-- I would ask my gp for tegretol ( or the generic epitol which is very cheap at Walmart!) They also say that tegretol is actually used to diagnose TN-- if it works-- then that is probably what you have.

5

Thank you for the advice everyone. I really hoped that yesterday would be the beginning of getting me out of pain. My doctor did order the MRI. But I have to wait until there is an opening to get it. So I'll be doing some more waiting. I guess I will keep going and keep trying to find someone who can help me. I really want to get back to being able to hold a conversation again without pain! My job is suffering, since I can't talk to my clients.

I think I will contact one of the doctors on this list. I want to see if they agree with my neurologist or not.

I've just about run out of energy for this process. It's just an endless parade of doctors telling me they don't know what's wrong. But it's good to hear that I'm not alone in the struggle. That shared experience validates it somehow.

6

Exactly as my appt went. Not neurological go to pain clinic, can’t help you.

7

Oh friend I feel for you! Yes I had two neurologists The first one was a (excuse me for this) a jerk. He asked me when I first had pain and when I thought for a moment he slammed his fist on the desk saying “wrong answer”. I was shocked. He asked again and I got the same response. He took a wooden tongue depressor out and rattled it around hitting all my teeth and told me to get my teeth fixed. I had been seeing my dentist almost weekly and my teeth were fine from X-rays root canals and extractions and there was nothing wrong. Second one threw her hands in the air as she did not treat ATN. Keep looking you will find one who will work with you. Or see a neurosurgeon who may refer you to a neurologist that they work with. That happened to me
Good luck
Chippy

8

I can relate 100%. The only neurologist I've seen, I had to wait for 3 months just to get an appointment. He was very patronizing. When I talked about how I thought my pain was due to the nerves, he said "well, all pain is due to the nerves...that doesn't make it neuropathic pain." That statement should be awarded an A+ in unhelpfulness. I mentioned how Tegretol was helping me a lot, then he acted shocked because he said Tegretol was only helpful in trigeminal neuralgia, and my symptoms don't fit TN. He thought I should try to stop taking it. Yes, Mr. Expert, it's a great idea to stop taking the only medication that's making my life bearable! You get the idea.

These doctors are just insecure because they don't really know what is going on with us, since we do not fit the typical classic TN symptoms that they were taught in med school and residency. They are keen to foist us off on other doctors or just dismiss us as nutsos altogether. Keep looking! You will eventually be able to find someone to help you. It doesn't have to be a neurologist. Some pain management doctors can be quite good as well. There are also dentists who specialize in orofacial pain medicine.

9

Oh, wow! It sounds like there a lot of people here who have had the same problems getting a diagnosis. It's discouraging, but sort of encouraging at the same time. It sounds like you've all found someone who can help. I hope I find someone as well.

I decided to take a couple days off my search for relief. I've been at it nonstop for over 3 months. And I'm just worn out. So I will get back in the saddle on Monday. Thank you all for sharing your stories. I feel better knowing that I'm not alone in this.

10

Wow, sounds like the neurologist I saw in Oregon!