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ATYPICAL TRIGEMINAL NEURALGIA AND MS
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ATYPICAL TRIGEMINAL NEURALGIA AND MS

Have any of you had TN as your first symptom of MS?  I am 38 and have had symptoms like atypical trigeminal neuralgia on going for over 2 months now.  It started with left sided numbness, changes to burning, a few incidents of a stabbing pain.  My first MRI showed numerous (neurologist counted 13) white matter hyper signal intensities on FLAIR and T2 weighted images, mostly in the subcortical white matter on both sides.  Radiologist stated that findings are not classical for MS although that remains the most likely diagnosis.   I have also had  migraines since childhood, so Neurologist assumed the WML's were associated with them.


Since I have been"numb", I can't always recognize when I am getting a migraine.  Has anyone else had this experience of getting just the vascular effects of the migraine w/o the pain.  I think I had one go on for about a week and I could hardly sleep because the throbbing in my face was so bad.  Once I took my maxalt, symptoms totally resolved.

I started having tingling down my upper back, and so I had a second MRI done (only @2 months apart) and it showed no change.  They also did a MRI on the spine and it looked good.

Over Thanksgiving, I actually had family members accuse me of making this all up in my head.  I WISH!!!

My neurologist finally told me that he is concerned that I have MS and will do another MRI in 6 months, and to let him know if I have any new symptoms.

Does any of this sound familiar to anyone?  I don't know if I have the beginnings of MS, I just know SOMETHING is wrong.
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20 Comments Post a Comment
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293157_tn?1285877039
Hi..I'm not yet Dx with MS..I have probable MS, sounds like you might too.  All this sounds so familiar, but I didn't have TM to start with.  

I do have some now, not as bad as what you have though.  I have other issues and my MRI have lesions and I have to go for a spinal MRI as well.  

So, it's a waiting game and let your Dr know any changes, hang in there and keep us informed on how your doing.
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335728_tn?1331418012
Welcome Stacey and I am sorry to hear that you have been having so many problems and pain!

I was diagnosed with MS in 1993 but thankfully have been in remission until this year.  In October 2006 I presented with a sharp "ice pick" type pain in my right temple and my left eye was drooping and the left side of my face was numb.  I was treated with solumedrol and prednisone and was fine until Feb. 2007.  In Feb. the pain started again in my right temple and my left eye started to droop and the left side of my face became numb.  I was diagnosed with Paratrigeminal Neuralgia (Raeder's Syndrome).  It is a rather rare condition that is related to the cluster headaches.  I was again treated with solumedrol and prednisone and it seemed to stop the pain and the drooping...temporarily.  There are differences between trigeminal neuralgia and Paratrigeminal Neuralgia one being that I do not feel pain if something touches my face. Now I don't know what classifies you as having "atypical trigeminal neuralgia."  I do have a request for information in with a Dr. Kauffman in Manitoba who deals specifically with the "Neuralgia's" and I am hoping to hear from him in the next week or so.  The nurse wasn't sure if the Paratrigeminal Neuralgia I am suffering from is within his realm but she said he would look into it and let me know and when I hear I will post the information on here.  One of the main questions I do have for this Dr. Kauffmann is whether there is a connection between this disease and MS?  I have never gotten a clear answer about this from my neurologist and anyone else I have asked gives me different answers so I need to go to the source I guess!

Now, my case other than the Neuralgia is not that similar to yours.  I presented with Grand Mal seizures in 1993 when I was first diagnosed which have been under control with meds ever since.  In July of this year I began having a lot of pain in my hands and legs.  In November I had a 10 day episode of Vertical Double Vision which is better now but I still have the occasional episode.  In November I also began having severe burning pain in the heels of my feet on occasion which now tends to travel up the backs of my ankles.  I have been told that this is "neuropathic" pain and I am on the maximum dose of anti-seizure meds tegretol and neurontin for the pain.  I had an MRI in November which showed a number of lesions on my brain however, there is no past MRI to compare the lesions to, so.....

I am in the process of changing Neurologists and I have my next appt. on Dec. 17th!  I will post the Dr.'s e-mail address and his website for you after this...may take me a bit of time but I will do it...maybe you can contact him yourself and relate your symptoms to him for further information, just a suggestion.

I hope that I have been of some help or information or just some good reading material for you...ha ha ha...just joking!  I am glad that you came to this site and please ask us anything you want, rant and rave if you want, just talk if you want, we are here for you all the time and we Welcome you with open arms!  There are a lot of GREAT people on here and we will help all we can!
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335728_tn?1331418012
Hi Stacey...I'm Baaaack!!!
Ok, I got that information for you if you are interested...it's totally up to you but you might be able to get some more information than if you are face to face with your doctor...seems to work that way sometimes!

You can send your letter stating what your story is and requesting information to:
Janice Nesbitt

The website that is run by Dr. Kauffmann is at:
www.umanitoba.ca/cranial_nerves

Like I said in the last letter I will post any information that I get from Dr. Kauffmann hopefully soon.  In the meantime, best of luck to you Stacey and we will talk soon I hope!

Rena705
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Avatar_n_tn
Thanks for your responses!  I realize that I have become a "broken record" to those around me that really can't relate to anything that I am saying.  I am thankful to have a forum to discuss these issues without feeling like the freak show at a circus! LOL
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335728_tn?1331418012
Hey Stacy...No freaks here!!! Well....maybe one or two...like me who has nothing else in life to do but be on this website but if trying to help people makes me a freak...I Like IT!!!  Like I said, we are here 24/7 and someone will always listen...rant and rave all you WANT!!!  tee hee

Rena705
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335728_tn?1331418012
Hey Stacey...just wondering if you had a chance to send your info to the addresses I gave you?

Rena705
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Avatar_n_tn
Yes I did!  Thanks for the info!  I just started on a new daily med for migraines and it has really helped with all the weird tingling/burning feelings in my face.  When it wears off  I can feel it coming back.  It went into my gums yesterday which was strange.  I'll be looking forward to hearing any information that he sends either one of us.  Thanks again!
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147426_tn?1317269232
Hi, Welcome to the forum.  You've asked an interesting question and are in a situation that is common here.  Severe and atypical migraines, without headache, can certainly mimic other neurological disorders like MS, seizures and storkes (??)  If I edit everything I'll never get anything posted,,,:(

It sounds like you have various abnormal sensations in the area of the Trigeminal nerve.  But, I can't tell from what you wrote if the pain is definitely felt to me migrainous or if there is some suspicion that it might actually be MS.

The subcortical white matter lesions could be ischemic (from the migraine disease) as the subcortical area is one of the locations for tiny vessel disease.  MS lesions also occur in that area commonly.  The most common area would be the peri-ventricular area, the subcortical white matter, the corpus callosum, and a few others.  So the radiologist is correct about them not being classical, but it is like a "Bell curve."  The mjority will be in the most common area, but 25-35% will not be.  When the radioligst states that demyelination is the mostly likely cause, they are usually basing this on the size, shape and character of the lesions.  That assessment is important.  There is some research that states that MS is often associated with a change in the intensity, frequency and character of a person's migraines

What med are you on for the migraines?  Is it also a med that is used for neuropathic pain?

Now for the discussion on TN - Trigeminal Neuralgia.  About 3% of people with MS present initially with TN.  As TM is beginning it is often more intermittent, it may be just odd sensations or numbness.  The classic, excruciating stabbing pain often develops later.  People with "atypical" TN may have an almost constant deep, aching pain, sometimes with the lightening jabs superimposed.  The areas in which the pain is felt certainly can include the gums and teeth on that side.  Many a TN was discovered by a dentist doing an emergency evaluation for what was thought to be infection.  Have you had any similar pain on the other side?  Bilateral TN is an important pointer to MS.

The paresthesia in your back sound more like MS than a migraine.  What other symptoms have you had?

I'm sorry that your family has made the "crock" accusation.  That is incredibly painful to go through.  In many cases the comments are made in fear that you may really have a "dreaded" disease.  It's a form of denial, but it really isolates you and makes you doubt yourself.  We understand that here.  It's why we formed the now-famous Greek House "Hypo Gamma Chondria" for all those who are afraid they're going crazy, have been told they are crazy or are afraid they'll be crazy in the future.  We are made up of the Undiagnosed, the MisDiagnosed and the Diagnosed, but Pissed Off.  You are welcome to pledge.

It looks like Rena gave you some good direction on TN.  Also there is a great website for Facial Pain Associates.  The link is:

http://www.fpa-support.org

You will find some great info there.

I hope this helps and that you stay with us as your docs sort all of this out.  And please let us know what the migraine med is.

Quix, MD
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Avatar_f_tn
Yes, you can have the migraine headaches without the pain.  I get Opthalmic migraines.  No pain---lots of vision problems.  I also get ice-pick migraines, and migraines with auras, I think complicated migraines and status, I think.  I have been having a lot of the facial-pain as well as temple pain; and of late I have had a lot in my jaw and possibly TMJ area.  Also, years of facial numbness.  Over a year on the right side and then about a year on the left side.  

I finally went to the hospital for some phenergan and dilaudid IV injections yesterday as my migraines go non-stop for months.  I have tried basically every kind of preventative in the book and I now take Maxalt and Vicodine and compazine or phenergan and other preventatives and toradal..  I basically have migraine everyday.  Two days ago I became rather disoriented with it and thought I was on the floor instead of the stairs.  I reached for something and fell on the landing backwards.  I then decided to go to the ER.  I have torn the ligaments in my ankle and have to see a surgeon.  I have also been concerned recently about weird chest sensations and severe jaw/facial pain with my migraines.  I thought that perhaps I was getting a sinus infection that was heading into my chest and asked my PCP and the new neuro for antibiotics.  The PCP gave me nothing as I did not have a fever at the time.  She said I would have to see someone else, perhaps a dentist.  The neuro said it was anxiety and I am not sure that he even really listened to my chest.  

The ER actually wanted to know whether I wanted the migraine or my ankle or my chest treated.  I hate it when they do that.  Well, I made the ER take care of my migraine, check my ankle and check my lungs.  I still did not have a fever.  Now I have pneumonia and nodular infiltrates and have to be checked-out some more.  

I wish these doctors would just listen to us as we know our bodies.  I was itching before, too.  I almost always have a respiratory infection after I start itching.  My old PCP finally agreed with me that I had some kind of autoimmune problem.  Even he, at the beginning, would not give me antibiotics and within 24-48 hours I had a severe respiratory infection.  Finally he learned to listen to what I said my body was telling me.  

Does anybody else itch before getting sick?  My benign skin lesions, especially (such as moles, etc.) will itch like crazy.  I guess it is due to some stimulation of the immune system.

I have noticed one other things.  This may seem really strange.  This last year I have really started with the hand tremors.  But, when I get a really bad migraine and become ill, my tremors seem to get better.  I wonder if all the electrical impulses are being rerouted in the head or something.  I know heat worsens the symptoms.  But, right now, with the pneumonia my temperature is lower than normal (even before taking the meds) and my tremors are almost gone!  Go figure!  Anybody else notice something like this?
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Avatar_f_tn
I just reread Quix's letter more closely.  My neuro said that the migraines are separate from MS and another neuro said I must have lupus because of the severity of my migraines rather than MS.  I  was never told about the TM being in the gums or teeth.  Man I have had this for two months.  I hate the lightening bolts...Ugh.  Once or twice I was told possibly cluster as well as migraines.  But, I do not get the runny nose or really droopy eye.  Since I have been having the cardiopulmonary symptoms my tremors and vision are better.  Triple vision since my exposure to chemicals that burned both eyes.  Eyes even seem a little better now.  Vision is just weird a lot of times.  

I like Quix's hypo gamma chondria.  This doctor I saw in the ER I have seen many times.  I think he may have been the one that said that other than a really severe migraine I appeared fine and thought I was probably hypochondriacal the first time he saw me.  I think he is the one that threw away the spinal fluid samples and would not test them for infection or lupus or MS approximately two years ago (at another visit).  Another MRI shortly after that showed new spinal lesion(s).  I told the nurse to tell him to check the results of my MRIs from October.  The ER would not do one last December.  I told her to check and see that the head-radiologist and my new neuro agreed that there are lesions and finally diagnosed me with MS.  I am not just making this up.  I let him know that I was in the anxious-sweet state with my pain, but was close to entering the not-so-nice phase of my pain tolerance.  I told him the ER pretty much knew me by now and to fix me and then check me out.  For once I did not have to wait for hours there.  Thanks be to God.

I have really noticed a change in my migraines back to a period shortly before the lesions started showing on MRI.  It seems that they steal my life from me.  Sometimes my physicians wonder how I manage to talk and laugh when I am obviously in a bad migraine as evidenced by examination.  I just try to keep going.  But, it really makes my temperment more labile.  Perhaps that is the MS, too.  All I know is I was constantly complimented on how calm I weathered troublesome storms.  I was always the "cool" cookie in a crises.  It seems I have developed somewhat of a tempestuous side since my MS.  Anyone else notice this?
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Avatar_n_tn
Thanks for all your migraine info needanswers!
My med is nortriptyline which can be used for TN.  I have only made it up to 20mg QHS, but it really makes a difference.  I guess I only called it Atypical TN because I really don't know what is going on??  I have only had 2 real instances of the actual stabbing  pain but mostly just the odd numbness, burning, tingling, etc. are constantly present, but just on the left side.  I wasn't sure if the week long throbbing (finally went into both sides) in my face was from the TN or a migraine (really thought migraine, and maxalt fixed it).   I could hardly sleep because it was  painful to put any pressure on my face while laying down.  

This all began in the begining of Oct when I got two really bad nose bleeds (never had one before)  The second came during a migraine and after we stopped the bleeding the whole throbbing/pain of the migraine were gone, like it had relieved the pressure.  I always get migraines on the left side and the nose bleeds felt like the exact spot where they would always start throbbing.  (I remember  telling my husband that I didn't know if I would ever get them on the left side again) Well, I have but they are totally different and a lot more numerous than before.  Anyway, a week after that my face swelled slightly on the left side and got numb, and that is when they did the mri.  We were thinking aneurysm going in and came out with the radiologist saying MS most likely diagnosis. (even though not a classical presentation)  My neuro basically told me I have the brain of a 70 year old!!

I have been feeling dizzy the past few days, but you know how all this can play tricks on your mind.  I definitely need to pledge Hypo Gamma Chondria!   I don't want to over think all this( which is probably impossible) but I don't want to ignore anything important either!
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Avatar_n_tn
I get complex migraines without pain and feel as though I am stroking...then a panic attack ensues...lol...I understand how frightening they are.
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Avatar_n_tn
I did not start off with TN, but I have had it and feel your pain.  It's quite possibly one of the most horrible types of pain there is - you just want to shoot yourself when it really digs in - I certainly hope you get some relief from it when it bothers you.  They put me on tegretol, which helped a little - not completely, but some.  I haven't had it in years thankfully, but anytime I feel any little twinge of pain near my cheek, I get afraid it's coming back.

My neuro explained that TN isn't just an MS thing - anyone can get it, especially elderly people for some reason, but it's one of the more common afflictions people with MS do get.  The numbness certainly sounds MS-like though, and the fact that you have something showing up on your MRI.  I would keep pursuing this like a dog until you get answers - nobody should have to be playing the wondering game.  Good luck to you.
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Avatar_n_tn
it is such a relief to know that others KNOW what I am talking about.  I have stopped talking about it b/c I feel no one understands a word I am saying.  I was so afraid I was going to stroke out !!!!  It just seems there is always some new strange symptom  popping up!  I did make an appointment with an MS specialist in my area, but  couldn't get in for 3 months.  This was in the beginning when my Neuro really felt it was all migraine related and I just wanted a second opinion.  Now my Neuro is concerned that I might have MS and has gotten more aggressive.  I probably don't even have to ask if I should still see the specialist???  I am sure everyone would say YES?
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Avatar_f_tn
YES!!!
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335728_tn?1331418012
YES, YES, YES!!!!!
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147426_tn?1317269232
YES!!
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Avatar_m_tn
Hi everyone,
I am posting this because I've had ATN for almost 3 years now, taken topomax (topamax) and lyrica for the pain along with percoset for flairs.  I'm writing because I've taken a different approach to treatment now with results - going after the CAUSE.  It is not normal to develop intractible migraines and ATN without something causing it, in my case I tracked it down to Lyme Disease, a tick borne disease.  Most Lyme tests are worthless, so I tested at a specialty lab, Igenex in Palo Alto, CA.  With antibiotic treatment (mind you I've been on it for over a year), my ATN is FINALLY going down, as in almost GONE.  Mind you, I also almost got that surgery to put in teflon pads but my Lyme doctor begged me not to and thank god he was right.  If you have ATN or MS like lesions that are not typical of MS, please please get yourself tested by an LLMD, a Lyme specialist.  It is the only way.  Do not rely on standard hospital labs. Lyme is the most politicized disease at the moment.  No one wants to touch it with a ten foot pole bc you can get prosecuted for treating with long term antibiotics in most states.  But antibiotics work.  Thank about it.  Something is irritating your trigeminal nerve.  If it wasn't from dental trauma, something is irritating the nerves, as in a pathogen, in my case it was the Lyme bacterium.  They attach to your nerve or any other weak spot in your body and inflame the nerve.  if you've had amalgam fillings that is what has weakened the nerve in teh first place to allow the susceptibility of the nerve to the infection.  Lyme will NOT get better on its own.  You MUST irradicate with antibiotics or you can develop other neurological (MS like) and even heart irregularities.  Please please all, get yourselves tested thru the right channels.  I'm hoping that at least someone who reads this is listening bc no neurologist is going to tell you this.  My neuro even KNEW that Lyme could do this but didnt bother to tell me there were more reliable labs to test for Lyme bc regular tests are bunk.  Type Truth about Lyme into google and read up more on this and you'll realize the majority of people treating Lyme HAVE ATN.  And it WILL and CAN go away by treating the Lyme, not by going onto anticonvulsants.
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1394601_tn?1328035908
You might want to start a new thread.  This one is from '07.  Many won't see it.
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1453990_tn?1329235026
Yes, Lyme can cause TN, but can be ruled out quickly with a Lyme Titer.  I was one of the first group of Lyme victims in CT (1977) before it was known to be a spirochete.  I do not have a high titer now, and have TN and a demyelinating disease.  But Lyme's and  MS are causes of demelination, TN is one possible effect of both.  That is why Lyme's has  ALWAYS got to be a rule out in the diagnosis of any demyelinating disease.

Bob
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