Bilateral TN? Something autoimmune? POTS?

[snowypickles]

Hi everyone, this is the first time I've ever posted in a medical forum! This one seems like a great community and I've read quite a few posts in here. I'm posting because I haven't come across anyone with the type of "TN" I (may) have and while I will cross-post in a TN forum, one thing they are going to check me for is MS. I apologize for the long post.

So here goes. A couple of years ago I was in a gym on a hot summer day with no a/c and I got this out of the blue super painful zaps/shocks in my face. I was immediately concerned it was somehow to do with my heart (I have POTS) so I headed out of there fast. I went back a couple days later, and same thing happened. It freaked me out quite badly, obviously in addition to the very painful tasering of my face that sometimes made me go 'oh god!' out loud. So I quit going to the gym after a couple weeks. My sis is a doc and after a long convo she said it's unlikely your heart. Phew.

So then I thought it might be related to my back. I had previously gone through this out of the blue back spasming in one specific area. I couldn't wash the dishes or garden because bending my neck brought on a very angry cramp in my mid-upper back in one spot. After 8 months of it I had an MRI of the mid-back and it showed bone spurs and schmorl's nodes, but nothing else. Rheumatologist thought it was odd as I don't have any history that would lend itself to either of these, plus he didn't think these could cause the muscle knots/spasms I was having in one location, plus this very angry buzzing in that spot. He gave me some exercises to strengthen some muscles to help. That eventually went away and is only a shadow of itself today. I haven't felt it to that strength for a couple of years.

Anyway. For the next 10 months, I don't recall the shocks happening too much. My activity certainly wasn't limited by it. And then I moved into a house on a cycleway and after my 15 minute ride to work the tasering was back to its old self. Furious amounts of googling didn't lead me to anything. I found trigeminal neuralgia really quickly, but dismissed it since it said "unilateral" and "has many triggers."

About 6 months after that, I started getting these zaps when it was really hot inside, outside, or just warm and I was moving about. I've only recently realized that you can get TN in both sides of the face. However, I have never read of anyone ONLY affected by one trigger, and/or only affected by the heat!!! So...no matter how many different searches I do for another disorder, TN is the only one that fits to a T. It's in all branches, more common in my cheeks and jaw/chin, and more common on the left side, however I do have it in both sides of my face and sometimes right above my eyebrows.

Anybody? See anything here? I find going to the doctor very distressing because most aren't familiar with POTS and that itself causes a lot of vague symptoms. I've recently had trouble staying asleep, which leads to the inevitable fatigue and trouble remembering/concentrating/socializing. The one thing that has bothered me is constantly dropping little things and also whacking into things as I turn the corner or come up from bending down.

Ok so this post has gotten long and I apologize. I just needed to put it all out there and see if anything sticks for someone. Thanks to you all in advance for getting this far with my post!!! :)

[snowypickles]

Thanks very much for that! As you can see from my first post, I immediately suspected a spinal problem given the minor deterioration that had turned up on my mid-back MRI - now I wish they had done a full spine MRI. I'll ask the neuro about it when I see him. I don't understand why my GP would say it couldn't be related, but then again he's probably not considering something TMJ-related. Hopefully the neuro will shine some light on this! If (when) the MRIs come back clean I'll just trot along to the chiro or something and get myself adjusted!

I am hoping all the other autoimmune stuff I already know I have is just background noise and not related to this! :)

[supermum_ms]

So sorry for causing confusion, my apologises! I totally didn't notice that i'd inadvertently typed TMJ instead of TN it should read.....

"Bilateral TN not that long ago was not thought to exist, it had to be unilateral but there is bilateral TN and it's definitely associated with MS."

I've also accidentally deleted a couple of paragraphs between "MS." and the next sentence "There are other causes....." which explained the diagnostic issues you have of TN vs TMJ and why TMJ would probably be a more likely explanation from what you have mentioned.

TN and TMJ are often interchangeably used terms by patients, even dentists and GP's don't diagnose either very often, TN and TMJ are different conditions, but they are very similar with the overlapping nature of the symptoms. You noticed your self whilst trying to understand it, that 99.99% of the available information is centred on unilateral TN and what you experience is very very unusual in more than one aspect, for TN to be a likely explanation.

It would be better to keep in mind, that technically unilateral TN is actually considered to be rare, and Bilateral TN is rarest of the rare, and additionally bilateral TN is not even common amongst people who are diagnosed with MS!

Most difficult to diagnose medical condition, can understandably be mistaken for something similar when symptoms overlap and there isn't any conclusive diagnostic test evidence, definitive clinical signs, based on anecdotal patient symptom experiences, atypical symptoms or triggers etc etc etc.

TN has 'red flags' to help determine if the diagnosis of TN is 'more likely' than the alternatives, and you automatically hit the red flags because what you experience is bilateral, your under 40, untypical presentation of all nerve branches (1) forehead/eye area (2)- cheek and upper lip (3) - lower jaw and additionally it has an isolated trigger of heat and none of the expected associated triggers.....there are more inconsistent elements than what is consistent, the margin of error is higher based on those specific diagnostic points.
  
I do think something like TMJ is the more likely possibility, TMJ is the more common cause of bilateral, all 3 area branches and it's association with spinal issues, TMJ could possibly account for commonality of your other issues which are also associated with structural spinal. It's an idea to consider.....

CHeers......JJ

[snowypickles]

Hi supermum_ms and thanks for your reply. I'm a bit confused though - I meant TN (trigeminal neuralgia) not TMJ? My GP says it's TN but she is puzzled by why it's on both sides. I don't think she's ever seen it before.

I also realized looking back that I didn't say that this "TN" began with exercising in a very hot room, but after a long period of time (1.5 yrs) it showed up as happening even when I'm sitting still in a hot room. I don't have to be doing much of anything but if it's very warm and there's no circulation or fan, then I get these shocks in the face.

I did ask the GP if it could be my spine but because she thinks it's TN then she said no, it can't be related because that nerve doesn't intersect with where I have the back pain. Is it true that your spine has no effect on the TN nerve?

Thanks! :)

[supermum_ms]

Hi and welcome to our little MS community,

Bilateral TMJ not that long ago was not thought to exist, it had to be unilateral but there is bilateral TMJ and it's definitely associated with MS. There are other causes and because you've also mentioned spinal issues - spasms, bone spurs and schmorl's nodes, POTS, rib chondritis, stomach/gastric issues it is possible that these facial zaps (possible TMJ) and these other issues are actually all related to spinal causation.

This article explains the theories behind TMJ and spinal issues  http://www.pain-education.com/facial-pain.html

Keep in mind that these facial zaps originally happened twice whilst you were at the gym, and returned after moving house, which i'd expect required physical activity, possibly some lifting and moving boxes around etc the trigger may likely be a certain physically activity and not the environmental temperature if your inadvertently focusing on an finding an MS connection.  

Cheers........JJ

btw: "The pattern of the ANA test can give information about the type of autoimmune disease present and the appropriate treatment program. A homogenous (diffuse) pattern appears as total nuclear fluorescence and is common in people with systemic lupus. A peripheral pattern indicates that fluorescence occurs at the edges of the nucleus in a shaggy appearance; this pattern is almost exclusive to systemic lupus. A speckled pattern is also found in lupus. Another pattern, known as a nucleolar pattern, is common in people with scleroderma." http://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

If your's is a 'speckled pattern' and you do have Levels of 1:640, 1:1280, and 1:2560 which are meaningful results, it might be a good idea to get a second Rheumatologist opinion.