I will try to keep this brief and concise as to the information I have. In Dec 07 I developed tingling/numbness of lips, tongue. Brain MRI showed abnormal T2 signal in the subcortical white matter of left and right insula, perventricular and a few punctuate areas of T2 weighted signal in frontal lobe white matter. More testing, LP showed 4 oligclonal bands in CSF not found in serum and a elevated IGG index. Saw first neurologist and he said it was MS. Went to get a second opinion and he is a MS specialist he said it was trigmenial neuralgia and would have to watch for dissemination in time. Repeat MRI 3 months later showed no new lesions and no changes so he felt it was just Trigeminal neuraglia. ( not a fun one regardless)
TN was intially just r side, more atypical with burning spasms lips to below ears. But within 6 months it went bilateral. Another brain MRI but still no changes, so still sticking with diagnosis of TN. The TN has gone up and down with medications, but never gone away. The numbness went away and has returned twice. Most recently it reappeared a month ago in lips again. But this time I developed tinnitus and numbness/tingling in toes. Again more MRI, brain same, but did spinal MS protocol, no lesions but a thoracic cord syrinx was seen. It is small and neurosurgeon consult said right now 2.5 mm, so usually won't damage spinal cord until usually size of 6 mm. My toes he said does not feel related to syrinx but seemed to be surprised no MS diagnosis. For now watch and wait, if grows then a shunt will be put in to release fluid build up before permanent damage occurs.
Ok, my concern, I have had this TN since Dec 07, off and on bad seasons of it, with what I call relapses when numbness in face returns and painful spasms increase. Now new symptoms, I am afraid even though a MS specialist is sticking with a non-MS diagnosis since no new lesions and no spinal lesions I am worried. I am going to get a second opinion but just wanted your input since you all seem pretty informed on this website. I don't want to years later find out it was MS and could have done something more.
I haven't been a regular on here in a long time, but keep coming back. To some really awesome people, I might add! =)
I, myself, have been dx'd with MS for almost 2 years now, probably have had it for 12 years now. I only recently began having major pain from the TN. Used to be just slight pain/discomfort in jaws and pain in ears. never really understood till my 1st attack. I'm really feeling for ya, and I'd be really worried too.
Before my dx, I saw 3 neuros. The 1st thought I had MS, needed to wait. Got impatient and started looking for answers elsewhere. Ended up at MS specialist who sent me to his MRI machine where he saw no lesions. ???? 1st one saw some. Then few years later ended up with neuro that I have now who sent me to the same MRI machine the 1st neuro sent me to and found many more lesions than the 1st time. Enough for McDonald criteria/
I guess what I'm getting at is, and we have talked about this before on here, is the MRI machines themselves. Others on here are much more informed than I, in technical terms that is, but, ...........sorry, mental moment here, but it has something to do with the magnets in the machines. My MS specialist said he was using the best machine but turns out the other one was much stronger and could read better, with and without contrast.
I wouldn't be afraid to get a 2nd opinion and even more. I dont' know what it was, the lesion on frontal lobe making me not care, (lol) or just being fed up with the "I don't knows", but I got to where I'd find a new doc if I felt they were giving up on me. I just needed to know.
Please look up the conversations we had about the MRI machines or maybe someone on here will respond with that info. Also, perhaps, someone on here lives near where you are that could recommend a good neuro. Mine is not an MS specialist, but she's awesome. I don't get some of the services I hear you can get but she treats me very well and is very thorough.
Keep searching and I wish you the best,
Thanks Shell for your helpful information, I have set up appt with another neurologist to get a second opinion and then another MS specialist(different from my own:( Quix) for third opinion. I did review the MRI page you spoke about, it is a bit confusing but I think I get the gist of it. However all of my MRI's have been with a large radiology group and I assume they have very update equipment. But I could be wrong.
I thank you Shell for your input too, good luck with your personal battle...
Quix, I look forward to hearing from you, I see you have a lot of good information and as one of the leaders for this group. I am trying to watch this site daily so will look forward to your response and advice.
Thanks to you Both ...Amers
Sorry to take so long, just have not been feeling well.
You need to gird your loins and run - as fast as your little legs can carry you - away from this so-called MS Specialist!! Run for the hills! The way he is assessing you is so worng from so many standpoints, I hardly know where to begin!
I'm going to take it from the large picture - your overall symptoms and your test results - down to the little picture - the real story of the connection between Trigeminal Neuralgia and MS. The MS Specialist has missed the boat from all angles!
Okay, you have some tingling and numbness in your lips and tongue.I would guess that this numbness was mostly on one side. You see a neurologist. Recognizing that one-sided facial numbness is a often sign of a demyelinating process in the brainstem he rightly does an MRI of your brain. This exact symptom is one of the most common presenting symptoms in MS. I don't know your age, but if it is between 20 and 40 you are in the classic age-range of MS presentation. If you are older, that would not rule out MS AT ALL.
At some point the facial paresthesias became painful with lower R-sided spasms - classic Trigeminal Neuralgia. So far all of this not only makes sense, but is a very common procession for the beginning of MS. In general, stand-alone TN typically occurs in the over-50 population. If you are over 50, your "specialist" might be confused by that. He may also believe wrongly that you are too old for MS. Poopy-****! It occurs at all ages!
So the MRI show scattered T2 Hyperintense lesions in the distribution classic for MS. So far everything fits. The neuro says MS, but for some reason does not feel comfortable making the diagnosis. At this point you have a Classic CIS - Clinically Isolated Syndrome with a Brainstem Demyelinating presentation. You have had one episode and have one clinical lesion. If you look at the data for CIS, you can see that you already have a high likelihood of converting to Clinically Definite MS. Many real MS Specialists would have begun talking about the use of a Disease Modifying Drug at this time (the DMDs are Avonex, Betaseron, Copaxone and Rebif).
Perhaps the delay was watching to see if you developed another attack or another lesion. I'll give him that much leeway - reluctantly, because it is obvious that this yahoo can't think with his Big Boy Brains!
At some point your Trigeminal Neuralgia appeared on the other side. This is a new attack and not just a worsening of the initial attack. So now you have had two attacks and have two lesions which are very close together. You have a very suggestive MRI. When there is strong clinical evidence the MRI does not have to show a specific number of lesions nor do they have to be classic in appearance or in location. Yours, however, are pretty classic - at least in location.
Any neurologist with a brain in his head and a modest knowledge of MS would see that the likelihood of you having MS is sky-high (90% or so!).
Somehow this specialist of yours seems to think that TN and MS are mutually exclusive. That is ridiculous! In the general population TN occurs 1 in every 10,000 people or so. However, depending on the stats that you look at it occurs in 900 in every 10,000 MS patients - almost 10%. My very brilliant MS doc stated that 27% of people with MS will eventually have a form of TN. Therefore, the appearance of TN should make any "thinking" neurologist consider looking for MS. The proper move would be to do an MRI of the brain and the brainstem. When lesions that are consistent with MS are seen the proper response is "Eureka!" What a dodo!
We all know that the MRI does not pick up all lesions that are in the brain. It simply does not have that high a resolution. When my brainstem MRI did not show a lesion for my TN, my neuro said, "Well, I don't see a lesion causing your TN. That's good! Nobody needs a big lesion on their brainstem."
Now, there has been an LP. You have 4 unique Oligoclonal Bands in the CSF. What!!!!?? This is now highly suggestive of MS. There are few things that will cause that many O-Bands, except MS. Even to the Mayo Clinic that is a positive result for MS. What is that idiot thinking of!!??
Good Gracious, I am beside myself with fury and bewilderment and BOTH of us are ready to kick this dufus to the curb!
I assume that somewhere along the line that you have had a good search for the mimics of MS. Mainly blood tests to rule out all better explanations of your symptoms, the physical findings and the testing results. Before MS can be diagnosed all more reasonable explanations need to be ruled out. This is looking for autoimmune diseases, various infections, metabolic problems, cancers, deficiencies, etc.
NOW - let's talk about the Trigeminal Neuralgia itself and it's relationship to MS. I have already explained that TN is incredibly common in MS. In fact my brilliant MS specialist recently quoted me the stat that 27% of people with MS will develop MS of one type or another. I think his number is so high, because increasingly the real MS experts are including atypical pain (constant burning or aching or boring pain for 50% or more of the day - with or without the painful zaps of pain you describe). Prior to a few years ago, they would only include the paroxysmal zaps as true TN.
Now you give us another zinger, that your DUMB (Doctors with Unfounded Medical Beliefs) specialist has missed. You began to have TN on the other side, too. Bilateral Trigeminal Neuralgia is almost never seen in the general population. It is almost exclusively seen in MS. We have had members report here that their neurosurgeons have stated that ALL bilateral TN is MS - period.
The thing that I have read about bilateral TN is that it doesn't occur simultaneously on both sides. The lesions are far enough separated for each nerve root of the CN V (Trigeminal Nerve) that they are almost always separate lesions. If they were a single lesion, so much of the brain stem would be involved that there would be severely disabling symptoms. So, they can occur, but generally act differently from each other.
Bilateral Trigeminal Neuralgia = multiple sclerosis - in the minds of many experts.
Now, you have had clearly another attack in a part of the nervous system quite separate from the Trigeminal Nerve. You have numbness in your toes - which side? Now you have had 2 clear attacks and have 2 clinical lesions in the CNS. The McDonald Criteria state that, if the mimics have been ruled out, this is enough to diagnose you with MS, especially if there are consistent lesions in the MRI - WHICH YOU HAVE! You have all the evidence needed to make a firm diagnosis of MS.
Now, your dork of an neuro seems to also think that the MRI in a person with MS must always change within a few months. This is absolutely false! A person with MS may have the emergence of new symptoms withOUT having new visible lesions on the MRI. This is a common misbelief of neurologists who sneak out of their Continuing Education seminars in MS to go across the hall to the Tiddlee Winks Tournament.
Now, if there has been a diligent effort to rule out the Mimics, I don't see a way in the universe that you can not have a diagnosis of MS. Period. Now, I realize, that here online I really don't have all the info - just what you have told us, but the facts that I have given you are not just my opinions. The forum members here will tell you that I can back up all of these facts. They also have read and been told these same things by the GOOD MS specialists.
You might want to read an interesting thread that we had a few months ago, called "Lies my Neuro Told Me." It discuss some of the errors that this specialist apparently believes. You really need a new opinion, preferably from an MS specialist that knows something about MS. I think you should have been on an MS med a long time ago, though I don't know exactly when all of your symptoms and testing occurred.
Maybe someone can bump up the "Lies My Neuro Told Me" thread. I can't put my finger on it.
Amers, I'm sure you have questions. Bring them on, and Welcome to the Forum!
I "bumped" the two threads you might want to read to the first page.
The first is the one on the CDIS, Clinically Isolated Syndrome which should have gotten you on an MS med a long time ago.
The second is the "Lies My Neuro Told Me".
You also might want to read the Health Page on the McDonald Criteria which spell out the manner in which the diagnosis of MS is arrived at. You only need to go as far as "Scenario I." This is a very long article, but it might be worth going through so you can see where your MS neuro is out-to-lunch.
First of all, there is no dx of "just" TN. It is excruciating and I am so sorry you have to deal with that pain, I meant that "just" doesn't do enough justice to TN.
I have had TN for a few years, it wasn't DX until I saw a MS neuro. My PCP always thought I was starting to get Shingles, ear infection, TMJ,..the list goes on and none of these things came to be.
I am on Trileptal which is supposed to help the bouts of TN.
I was also told TN is a problem of an "older" person, age 60-70 + for "normal" TN. If a "younger" person develops it, one of the causes is MS. I am 42, and have probably had TN on and off since age 35.
I ALWAYS only had TN on my right side, until this past December it occurred on my left side. I was NOT happy about that. It is without a doubt, the worst symptom MS has given me.
Nancy - I thought I made that point to you before. It is not universally accepted that the two are synonymous, but bilateral TN is extremely rare outside of MS and not that uncommon in MS. I think you should see our Dr. C at St. Vincents.
Wow thank you for all that information, needed a couple of days just to digest and get a handle on that information. I did check out those two health pages and they were excellent although the McDonald criteria thing is still confusing to me mostly from standpoint of time and space thing since they don't see actual new lesions.
FYI: I was 48 y.o when diagnosed with TN, now 50 ...yee haw 1/2 century. I have had workups for the autoimmune diseases because when I moved to Texas in 2000 I developed Reynaud's, have had a postive ANA from that time ranging as low as 1:80 and recently a month ago with new symptoms it was up too 1:640 always with the anti-centromere pattern. I see a rheumatologist yearly and her diagnosis is undifferentiated connective tissue disorder I am just one of those who have certain positive results but not enough to categorize. I have had three major workups and all the tests for lupus, scleroderma, sjoren's, lyme, antiphospholipid, rheumatoid arthritis etc have always been negative except of course my Epstein Barr levels are off the chart I had it as a teenager, as well as measles, mumps and ruubella, vaccines werent invented til later..see how old I am:)
Besides the Reynauds my other symptoms are chronic myofascial pain in neck and shoulders, tons of knots a lot from stress and holding ice to face for two years since it is only pain relief I get. Have tried almost all of anti-seizure and other meds, neurontin, lyrica , cymbalta, tegretol, keppra and now on lamictal. They all work to decrease spasms but never eliminate. I seem to top off on max dose and then switch to another one. Tegretol seemed to work the best but my sodium just kept dropping.
My TN is now definitely the atypical because I get burning and spasms on both sides, but they do sometimes occurs together so maybe that is why he thinks just TN since atypical, or maybe cause it started late at 48 years. He says no lesions seen in Trigeminal nerve but he says usually can't see cause so small.
My question could it be that I have some virus that attacked and got through blood brain barrier causing that damage. I guess it is possible new lesions causing these "new" symptoms ,tinnitus, numbness in both toes bilateral and return of facial parasthesia may be to small to pick up but still I wonder. I have my appt with the orignial neuro tomorrow and get his opinion. I am also trying to schedule with another MS specialist and get his opinion too.
I just want an answer to all , that is where it gets so frustrating. I don't want to not treat and cause more damage if it is MS. I can't believe that a MS specialist would not be able to tell the difference that amazes me but I will see what other neuro says tomorrow. Thanks for all your great input, I can tell you have run the gamit ? spelling on researching up the hilt all this MS info. I will let you know what he says tomorrow.
Good luck, Amers--sounds like you have a very confusing situation with the other diagnoses, problems, test results, etc... but hopefully you will get some good information, if not answers, tomorrow at the neuro's. Keep us posted! (Quix is a gold mine of info and analysis, isn't she? :)
It does indeed seem amazing that even MS specialists can't always tell for sure whether it's MS, but it can be a tricky disease, and there can be so much overlap with other conditions. The bilateral TN seems like a HUGE red flag, though. With periventricular lesions and positive spinal tap--wow. It sounds like the neuros are being really cautious about diagnosis. Which is good, because one doesn't want an incorrect diagnosis of a very serious disease... but on the other hand, caution shouldn't stand in the way of good and thoughtful analysis.
Quix--thanks, yes, I'm sure you did make that point about TN earlier, and I'm sure I'd read similar stuff even before then. I've long thought about trying to see Dr. C., but with a normal exam at ten years, no one's going to diagnose me--or even likely order more testing--no matter what the subjective symptoms. My reflexes are practically non-existent, the opposite of MS. I'm currently working with a PT on my slowed-walking/scoliosis issue, and if the exercises don't help, she's going to send me back to the doc to look for other causes. We'll see...
Hi again Michelle,
I was reading one of my old posts and saw that you have bilateral TN. My questions is, when you have spasms do they occur at the same time? Or do they start on one side only and stay on that side only during the spasm.
The reason I ask is because I too have bilateral TN for two years plus. Mine is atypical with buring, boring , aching spams. But lets say my right side starts burning then it seems like my left side will start as well. Usually I am having to alternate ice to both sides of my face. Quix states that bilateral TN is very uncommon to see except in MS. So I guess I am confused, I am still undiagnosed and when I see my second opinion neuro this Thurs I would like some extra info from those who suffer with TN. Thanks for your help.
Also , if there is anyone else with bilateral TN please let me know how your spasms occur, I would so appreicate:)) Amy
I have only had the pain/jolts on the right side for about 7 years or so. It has progressively gotten more frequent and lasts longer for the last year of so.
I have only had it happen on the left side 12/09. I did not have it on the right at that time. So, for me, I have not had it happen on both sides at once.
I don't have spasms with it, but when it is really bad part of my face will have tics, like Quix said above.
It is horrific, excruciating pain when I have it. It "usually" effects my cheek, ear and scalp and sometimes my eye gets painful too. (Area surrounding my eye), and occasionally the side of my forehead,
Interesting to see that other neuros & neurosurgeons agree about bilateral TN and MS. I'm undx, but my neurosurgeon said he couldn't imagine anything else that could cause my bilateral (start of sx on right side separated by several months from initial sx on left side) TN. He did order the special MRI to look for vascular causes and none were seen. Oh, and did I mention it started at age 34?
Put that together with my clearly abnormal neuro exam, multiple sx over 8 years... You'd think I'd be dx. But my MRI is clear. So my neuro says my sx aren't progressing that fast. I think she's looking at my ability to walk, but my pain is incapacitating at times. I guess that doesn't count for getting DMD.
Thanks for all the info Quix.
Amers, I'm truly sorry you have to deal with this. I wouldn't wish TN on anyone. It's amazing to me you're not dx. With my clear MRI I understand the problem, but you seem like a no brainer!
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