Trigeminal neuralgia and MS

[monnie115]

I'm wondering how many of you who have been diagnosed with MS had TN as a presenting symptom. I've heard it's unusual, but it seems like I've heard of quite a few cases starting this way.
Thanks!

[MorningDoll]

I have TN, have had it since '91.  Now I am getting left leg pain and numbness upon rising in the morning.  Wondering if I am now getting symptoms of MS.  Do TN and MS go hand in hand??

[Medicaltherapist]

Over the years I have had the episodes of thinking there was a problem with my back teeth.  The teeth were fine, and the pain would subside.  Then, I have had more frequent episodes of, what I call, a left temple/eye pain.  It wasn't really a headache, but tender, with mild pain shots.  Several days ago, I developed pain behind and above the right ear, and would have seconds of very sharp pains.  I also though I had the flu due to nausea.  Yesterday, I had my yearly exam with the Dr. and talked about the strange skull pain behind the ear.  She said it was Trigeminal Neuralgia, and she wasn't surprised.  Even though there have been no overt MS symptoms, this, and my restless leg (especially my right leg and foot which cramps), are apparently all part of the big picture.  When I read about TN, all of the 'funny' symptoms over the years added up.  I wondered if the nausea I had several days ago was part of this onset, and judging by what I have read on this forum, it probably was.  I have my yearly exam with the neurologist in two weeks, and the plan was for me to discharge since there was no change over the past six years.  My internal medicine Dr. said, I will be staying with the neurologist, and I need to share with him what has been happening.  For the occasional eye stabs, my eye Dr. has had me use OTC drops in the morning and evening.  I have never gone to the eye Dr, the MD, or the Neuro due to the coming and going of symptoms; I have just kept up my yearly appointments.  The stabbing at the back of the head occurred at the time of my regular appointment, and I am so grateful I said something.  Sorry for the long post, but reading other comments has been extremely helpful.  I hope that all, who have such serious symptoms, find good pain management.  

[Sailorsong]

While my TN didn't appear when I first developed MS, it was one of the things that help my Neuro pin down my MS DX. I should also note that compared with other on here have said about their TN mine seems fairly mild due to not lasting too long at a time...of course while it is going on it seems like forever. LOL

Dennis

[Sidesteps]

I had atypical TN (if you look it up) though my Neuro didn't come out and SAY it. She said the eye/facial pain that I had for 10 months straight was not a migraine and seemed to be a brain nerve *thing.* It just slowly got better. It was a constant nagging pain - it didn't feel like a headache and pain relievers didn't help. I still have mild issues with it along with a few other issues but it is A LOT better. Not fun!

[Rena705]

I was diagnosed in 1993 but my disease was kind of dormant until 2007.  That was when the TN reared it's ugly head and I have been dealing with it since and it's not nice at all.

I am on 900mg/day of Tegretol and 900mg/day of Gabapentin.  I just started the Gabapentin a few weeks ago and the side effects are not nice.  I have also found out yesterday that my dosage will probably have to be raised as I had the usual pain last night about two hours after taking my evening dose.  My neuro has told me that surgery will soon be in my future if the Gabapentin doesn't help.  Hope you don't run into a lot of trouble with getting help for this horrible, tortuous pain that TN gives us.  Best of luck and you are in the right place for support!

Lots of Hugs,
Rena

[Princepaso]

I went to my dentist several times to get to the bottom of tooth pain even bought a custom mold
Without relief.   Horses and zebras
My ms doc after several docs put the puzzle together in my first visit 3t MRI and through exam
Wish the best

[Ojibajo]

I think they were talking about this on The Doctors today.

[Guitar_grrrl]

I've had TN twice, both times before I was diagnosed.  I presented with leg spasms, and when I  mentioned TN 3 years previous, my neuro took notice, and used that info as part of his workup.

[nancy99n]

I got TN 11 years after my MS diagnosis.  Had a Gamma Knife, and 2 balloon rhizotomies. Pain free and med free from TN for 2 years now.