Is your TN caused by MS or not or do you know?

I don't know if my TN is caused by MS and my neuro does'nt seem to know or not think it's important to know right now. I was fine on tegretol on and off for years but right now I am maxed out on it and it's breaking through. He wants me to talk to a surgeon which is fine with me. I was just wondering who knows they have it because of MS and how they know.




I have TN because of MS. It is due to a brain stem lesion of the 5th cranial nerve. Surgery will not help in my case due to this lesion. These are seen on MRI, but sometimes they are quite small, or cause problems when just mine did. I now have bilateral TN due to the lesion being very large. I also have quite a bit of numbness and tingling in my face along with the TN that goes along with the lesion. TN, however, is very synonymous with MS, and unless you have a vascular cause, I would be leery of surgery as it might not work. Best wishes.

I don’t know. I have auto-immune disease that caused lupus and MS and I assume it caused the TN also, so it’s a “which came first” type of question.

Chuck, from what I've read in medical literature, from 2 to 5% of all TN patients also have MS -- and most likely have MS symptoms caused by MS plaques on the trigeminal nerve. If you don't have pain or weakness in other areas of your body, then I'd say from a lot of reading as a layman, that it's less likely that you have MS. However, I'd disagree with any neurologist who actually said that MS was "unimportant". If you have it, you should be treated to slow its progression. (I suspect that what the neurologist may have meant was that he didn't think your symptoms matched up too well with that diagnosis).

The disorder can be a bear to diagnose. From what I've heard, one of the measures reported to be helpful in diagnosis is repeated MRI imagery at the highest resolution, to look for MS plaques on not only the trigeminal nerve but others as well.

Regards and best,

Red Lawhern, Ph.D.

LwTN Research Analyst

Hi Chuck,

I guess I know because I have TN and MS is a cause of TN. I can't imagine that if I have MS that there's any other cause of my TN. I guess there could be, but I think it would be highly unlikely. Then I have to go on, as someone with MS I need to seek the right TN treatment. From what I understand, and what I know from my own experience, MVD surgery will not be effective in someone with MS. I have had not one, but two MVD surgeries. The cause of our nerve damage is different. I'm new here, and I was just reading about a glycerol rhizotomy injection. Don't know much about it, but I like to check into everything I read about. I think this is the place to maybe get some information. Oh, as far as the tegretol, I don't know if it's good suggestion or not, but I've done the Tegretol thing and done with it. I've now gone back to Gabapentin and I'm using higher doses. I started at 900mg a day and now I'm taking 3600mg a day. At 1800mg a day I started to see good slowing in the signals, at 2400 much better, at 3600 I have a great night of no pain. Good luck to you Chuck!

Hi Chuck,

It is hard to tell for sure. Best I can tell at this point, if a neurovascular compression can be identified, it is separate. A throbbing flare had me think it had to be the anatomical thing, but inflammation in general also brings it on for me, and the inflammation effects demyelination. If that is also damaging my trigeminal nerve, it might be a combination.

One of my docs wants me to have a neurogram done. That is a modified MRI done with contrast and geared specifically towards visualizing the nerve structure. It is not sensitive enough with current technology to show all damages, problems, I.e. false negatives, but positive findings can fill out the picture considerably.

It may be worth mentioning that there is a substantial faction in the MS community proposing a vascular cause of MS (flow constriction, mostly), which could bring this topic full circle, in a way. Very complex, very interesting topic! Happy to talk more, if you are.