Help!

[Tia1]

My doctor that I have liked in the past and thought him both knowledgable and caring, has suddenly stopped returning phone calls in a timely manner, leaving me wondering what to do.

I called Thursday morning due to having nerve pain in my FACE. It is not fun! I have been diagnosed with TN, but this is different. The pain is on the opposite side and yes I did google after the pain became persistent and although it is in several different places became predictable somewhat. Then it was zapping me in my chin. I seems to follow the nerve high up in front of the ear and branch out to several different nerves.

What can this be? Is it a lesion in a certain area that is affected. I also get facial spasms in and around these areas. Could this be MS? should I be looking elsewhere?

Please if you have had this or can relate at all, please share.

[jreagan70]

I did google after the pain became persistent and although it is in several different places became predictable somewhat. Then it was zapping me in my chin. I seems to follow the nerve high up in front of the ear and branch out to several different nerves.

When you googled, what did you look for and what did you find out? What you're describing sounds very much like a problem with the trigeminal nerve.

Each side of the face has its own trigeminal nerve. The trigeminal got its name because it has three -- tri -- branches. The three branches allow it to cover much of the face on its side. It has both sensory and motor components.

The mandibular branch covers the lower lip and chin, up in front of the ear, and upward into the scalp.

What can this be?

Since the pain and spasms are affecting your face, there are only so many things that can be causing them. Your description fits trigeminal neuralgia affecting the mandibular branch.

Could this be MS? should I be looking elsewhere?

In a person with MS, MS is the primary suspect for neurological signs and symptoms. There are other possibilities, though, such as mechanical entrapment or a tumor. A neurologist will have to evaluate your particular situation.

My doctor that I have liked in the past and thought him both knowledgable and caring, has suddenly stopped returning phone calls in a timely manner, leaving me wondering what to do.

Fortunately, you don't have to wait for a return call to be proactive. If your neuro doesn't return your next call within a couple of hours, you can see your PCP, call another neuro, or go the the emergency room. Please don't sit waiting helplessly for a phone call from one person when you have other alternatives. If you have trigeminal neuralgia caused by MS, it's possible that quick treatment with high-dose (NOT a Medrol pack!) steroids can shorten the duration of a painful flare. Please move yourself quickly and get some help!

[Tia1]

jreagan, Thanks for your response. This is exactly what I feel is happening. I will reach out for a second opinion because I am having similar pain in different parts of my body. The face pain being more disruptive at the moment and has me wondering if something else is going on.

I keep having major pain episodes that have sent me to the emergency room that I am really concerned about. My doctor mentioned Dystonia and prescribed keppra, but didn't really explain the implications or speak to me about how to manage if the meds did not work.

Even when he mentioned dystonia, it was so casual that I did not fully realize the impact that this could have until I had like three episodes of extreme pain and googled on my own. Now I wonder if it could be something other then MS.

Would a second opinion get a complete study to rule out other MS mimics or will they just look over what has been done already and make a decision?

[Tia1]

I have a second opinion scheduled in the next few weeks. I will be gathering all of my medical records, hopefully without having to sever the relationship entirely with my current doctor.

[Tia1]

jreagan, Is there a specific treatment for Mandibular branch And TN. These pains are pretty intense. I'm not having them continually, but much more often then before. It is affecting my mood. I don't think I need pain meds because of the coming and going aspect. However, the intensity is letting me know I need to do something.

BTW, My doctor has gotten rid of two staff persons, including his office mgr. in the last few weeks, don't know exactly when, but this is contributing to the change in his office. The front desk person seemed so overworked and overwhelmed with charts piled up. I feel like I have no choice but to change doctors.

I have a second opinion scheduled for this Friday. I'm very nervous.

[jreagan70]

Hi Tia:

It's too bad about having to walk away from a doctor you liked. But it is what it is, and you have to do what you think is best for you.

If the pain gets too bad, don't make yourself wait until your appointment with the new doctor on Friday. You certainly won't be the first person who had to go the the ER with TN because the pain was just too intense. (We don't know for sure that what you have is TN, but right now it sounds more like TN than anything else.)

You said that you were diagnosed before with TN on the other side. Did you ever have any medications prescribed for it? Carbamazepine, oxcarbazepine, gabapentin? Anything for general MS nerve pain you can take? Neuralgia, no matter where it is, is treated with the same families of meds, so a med you already have for nerve pain might help.

When you're in pain, Friday can be a long way away. Please don't be afraid to go to the ER if the pain gets to be too much. They might be able to prescribe something short-term until your appointment on Friday.

[hunterd]

this only relates to your pain, have you checked with a ear, nose, and throat specialist? I had the same sort of pain that you are describing andit was diagnosed as TMJ by both my PC and by the ENT doctor. Just an odd thought

[Tia1]

Hi Hunterd, jreagan - I made an emergency appt. with my dentist yesterday, because some of my pain felt like a toothache. He did x-rays and gave the all clear, except were I had attempted mostly with floss to dislodge, whatever foreign body was stuck in my gum/tooth. So he gave me a mouthwash to use to avoid infection and told me to "Leave my gums alone" and "my tooth is fine" for the second time.

Of course it certainly doesn't feel fine! I had some work done in that area a couple months ago and I think that may have aggravated my face pain. I get muscle spasms in my face if I over use the muscles. The muscles feel tight, charged up and painful.

Kind of a weird set of symptoms to take to a doctor, don't you think.

I did think of the emergency room for the pain, but thank God, that it is not constant. Although it is happening more often and with greater length of time and intensity. My dentist offered pain meds, but I thought it best to avoid what the emergency room and maybe new doctor would have to evaluate as drug seeking. I don't have any positive response to most pain meds anyway except added headache, nausea, etc. with the exception of tylenol 4 after dental surgery that allowed me to sleep, twenty years ago.

I am already taking Voltaren, flexerel, baclofen, and generic Keppra, I would think that they would have some impact on the symptoms. As we speak, I am having pain that is in my mouth that is tolerable, with sporadic pains in my chin area, light electric, traveling pain, that is coming up my chin. Not the deep, emergency room pain that I've had off and on that makes you want a tooth pulled out.

Thanks again for your comments and suggestions. I really appreciate it! Yesterday I was at an appointment with my mom, dealing with traffic, city parking, had a phone conference with my daughters school over the phone, at the hospital and took my mom to the grocery store, came home to make dinner and fill out tons of paperwork, all while dealing off and on with this horrendous pain.

These last few days have given new meaning to "but you don't look sick" When this pain hits, I need to curl up somewhere and try not to scream, smiling and tying to look unaffected is a little more than I can take going forward. (sigh)

Also, as I fill out the new patient forms, there are no questions about pain for MS patients, which infuriates me. Numbness, weakness, yes! but nothing about spasms and pain???? which makes me wonder, if something else is going on.

[pennstater]

Hi Tia,

Sorry to hear what you are experiencing. Don't hesitate to write in pain on the new patient form for MS symptoms. Some forms I have seen list it, some don't. The old thought was MS did not cause pain, which there is plenty o studies to dispute it

Good luck.

[Tia1]

Thank you Pennstater,

I am definitely adding pain to the list, I don't have a choice! I need this taking of ASAP. It hurts!!! Thanks for thinking of me.

[Tia1]

hunters, what treatment did they give you for tmj?

[Tia1]

TMJ

this only relates to your pain, have you checked with a ear, nose, and throat specialist? I had the same sort of pain that you are describing andit was diagnosed as TMJ by both my PC and by the ENT doctor. Just an odd thought

I went to the new neurologist and he has a big personality, not sure if that is a positive or not yet. He asked a lot of questions and has ordered all of the previous bloodwork to be redone, testing for all of the mimics, which I am really happy about.

He also ordered mri's of the brain, cervical and thoracic with and without. I am happy about that as well.

However, my face pain is also going starting at the beginning. He wants me to get a night guard to start with. I do understand, because my pain was not super high when I was in his office and I probably do need a night guard, but the pain that I am having is not all explained by tmj. I am having pain in my chin, and my teeth. It completely coincides with TN the lowest branch. (can't remember the name.) My pain is also being triggered by eating and more often air condition. It is not 100%, for which I am grateful, but makes it hard to recreate the pain on demand.

I did find a bottle of gabepentin? 100mg and started taking it. It seems to be helping after a few days Pains are decreasing and I am thankful! I was so upset when I left his office with nothing to help with the pain. I will get the night guard ordered and I hope that will work, like it did for you. The alternative is scary.

[capitolcarol]

Help

I went to the new neurologist and he has a big personality, not sure if that is a positive or not yet. He asked a lot of questions and has ordered all of the previous bloodwork to be redone, testing for all of the mimics, which I am really happy about.

He also ordered mri's of the brain, cervical and thoracic with and without. I am happy about that as well.

However, my face pain is also going starting at the beginning. He wants me to get a night guard to start with. I do understand, because my pain was not super high when I was in his office and I probably do need a night guard, but the pain that I am having is not all explained by tmj. I am having pain in my chin, and my teeth. It completely coincides with TN the lowest branch. (can't remember the name.) My pain is also being triggered by eating and more often air condition. It is not 100%, for which I am grateful, but makes it hard to recreate the pain on demand.

I did find a bottle of gabepentin? 100mg and started taking it. It seems to be helping after a few days Pains are decreasing and I am thankful! I was so upset when I left his office with nothing to help with the pain. I will get the night guard ordered and I hope that will work, like it did for you. The alternative is scary.

Hi, so glad you found a new neurologist. That is the thing with MS. You have to do lots and lots of research to understand what MS and how it affects you. You can't let doctors blow you off. You have to find a good neurologist that is good and you feel comfortable. It's good to have the MRIs with and without contrast. Then, the next time you need to have your MRIs they will be able to see if there is any progression, etc.

Now, the TMJ, I think I was probably born with it. I can't think of a time that I didn't have it. My dentists hate me because I can't open my mouth very wide and I have a small mouth to begin with. It is very important to have a nightguard to protect your teeth and to also keep you from grinding your teeth down. Now, the first few days wearing the nightguard, you will be drooling so be prepared for a wet pillow in the morning.

Good luck. I'll be thinking and praying for you.

[palmtree]

Night guards are good. I wish I listened to my dentists and used them when I was younger. Now, I have no teeth. They ask we if I grind my teeth. I always said, "no". But I finally learned that many people grind their teeth when they sleep. Now thousands of dollars are going into crowns everytime I break another tooth beyond repair.

One of the dentist is in the office was horrified that they were ground down so much. I felt like there was something creepy and terrible about me. I just had MS and didn't know it.

But I think it is a cop out that your new doctor just sent you away with a prescription for a night guard. Not too long ago people with TN were referred to pain specialists who often combined high doses of Lyrica with a controlled release narcotic. The DEA is making it impossible for doctors to practice medicine in the full capacity for fear their offices are going to be raided. I am of the opinion that sick people should be treated humanely and those who violate the pain agreement will deal with the consequences because they will be there will be consequences.

[Tia1]

Hi, so glad you found a new neurologist. That is the thing with MS. You have to do lots and lots of research to understand what MS and how it affects you. You can't let doctors blow you off. You have to find a good neurologist that is good and you feel comfortable. It's good to have the MRIs with and without contrast. Then, the next time you need to have your MRIs they will be able to see if there is any progression, etc.

Now, the TMJ, I think I was probably born with it. I can't think of a time that I didn't have it. My dentists hate me because I can't open my mouth very wide and I have a small mouth to begin with. It is very important to have a nightguard to protect your teeth and to also keep you from grinding your teeth down. Now, the first few days wearing the nightguard, you will be drooling so be prepared for a wet pillow in the morning.

Good luck. I'll be thinking and praying for you.

Thanks for your reply. I will have to wait a few weeks to get the night guard. I am just getting my pain under control, so I am a little hesitate to get back in the dental chair. I don;t want to aggravate my face.