Cranial Nerves and MS

[rdmc]

I wanted to throw this out there and see if anyone has insight into cranial nerve involvement and MS.

Does anyone else have multiple cranial nerve problems? From tests, I have problems with cranial nerves V, VII, IX, X, XI, and XII. All kinds of problems with left side of my tongue and face, everything from no taste on one side, deviation of tongue, articulation problems, numbness and no movement in parts of my face, atrophy of SCM and trapezius, and hoarseness. Different cranial nerves are involved in each of those problems.

My quandry is I don't have a brainstem lesion...at least that shows up on MRI, and just wondered if anyone else has multiple cranial nerve involvement w/out brainstem involvement.

My neuro has noted the problems (which have been ongoing for 15 years but definitely getting worse in the last year or two) and we just ran a new MRI to see if something showed up (nada in the brainstem.)

Just wondering if anyone has any knowledge on this subject?

[Redwings]

That is odd. There are a couple of explanations for why CNVI isn't involved, but why CNVIII isn't involved when its neighbors are is bit of a puzzler.

What's your neuro's theory about the situation? Away from the brainstem, how do the nerves themselves look on MRI? And what (if anything) showed up on your MRIs 10 and 15 years ago?

[billiejeane]

That is odd. There are a couple of explanations for why CNVI isn't involved, but why CNVIII isn't involved when its neighbors are is bit of a puzzler.

What's your neuro's theory about the situation? Away from the brainstem, how do the nerves themselves look on MRI? And what (if anything) showed up on your MRIs 10 and 15 years ago?

Redwings,I have recently been having numbness to the left side of my face. Mainly around my left cheek and side of mouth. I have it right now. It started off and on about a week ago. Just assumed it was MS? Should I be worried? I know s/s of a cva. Thats not it. Your thoughts?

[rdmc]

That is odd. There are a couple of explanations for why CNVI isn't involved, but why CNVIII isn't involved when its neighbors are is bit of a puzzler.

What's your neuro's theory about the situation? Away from the brainstem, how do the nerves themselves look on MRI? And what (if anything) showed up on your MRIs 10 and 15 years ago?

Hey Redwings,

Well CNVIII might be involved, it just seems that test is less definitive, the other ones are so obvious. I have tinnitis, not aware of any hearing loss...I do have balance issues.

I just had a recent MRI, I haven't had one in awhile. I really expected to find brainstem involvement, because the cranial nerve issues have increased. But lesions are in the same old places. Waiting for a more detailed report (the first one they forgot to compare to the previous films and it was rather general.) From what I could read, lesions still frontal lobe, periventricular, not a lot of worsening. Years ago I started out with lesions in the corona radiata centrum semiovale, then progressed to a crop of frontal lobe periventricular and those lesions led to my diagnosis. None of them are large, and from the sound of this latest MRI, that hasn't changed much.

My main symptoms have always been the left side of my face, severe spasticity/contracture in my right leg/hip (have a pump for that now...yeah), left sided arm weakness, ...left foot is positive babinski. That along with minor bladder/bowel issues about rounds out the package.

I'm going to talk to my neuro about the latest MRI in a week or two. Last exam she noted the atrophy in SCM and trapezius. Everything is off kilter as far as muscles in my face/neck. Nobody's ever made explanation for the cranial involvement and it was my first symptom (TN showed up years before diagnosis.)

The reason this has me wondering (which is of little interest to anyone...but maybe you, LOL) is my BP has been eratic. I was tested for metanephrines and they're elevated. So I'm seeing a specialist to nail down if I have a pheochromocytoma or not. When I was googling the pheos, I came across an article about paragangliomas (pheo's first cousin, just outside the adrenal gland.) And it mentioned para's can hang out in the neck and if they do, they often present as multiple cranial nerve palsies.

So now I've been trying to become informed on the occurence of cranial nerve palsies in MS...especially when there is no brainstem lesion, so I can discuss it with the neuro when I see her.

They always say we shouldn't blame everything on MS...maybe this is one of those situations.

Time will tell.

[Redwings]

Definitely a head-scratcher. To dispense with CNV quickly, trigeminal neuralgia most often occurs independently, so that's one of the possible explanations for why CNV has been affected but CNVI isn't involved.

I was tested for metanephrines and they're elevated. So I'm seeing a specialist to nail down if I have a pheochromocytoma or not. When I was googling the pheos, I came across an article about paragangliomas (pheo's first cousin, just outside the adrenal gland.) And it mentioned para's can hang out in the neck and if they do, they often present as multiple cranial nerve palsies.

This is an interesting possibility to follow, though it presents the same mystery as an MS-related cause. The expectation is that something that affects so many cranial nerves (VII through XII) simultaneously would have to take up a fair amount of real estate and would show up on an imaging study. Yet your MRI shows nothing out of the ordinary. (Scratch, scratch, scratch...)

Another of the confounding factors is that some of the syndromes that affect multiple cranial nerves affect the upper nerves (III through VI), which aren't the ones bothering you. Yet another factor is that your neuropathies aren't recurrent but are long-term.

In a situation of multiple cranial neuropathies that don't appear to be inflammatory, there's always the possibility of a compressive cause -- either a space-occupying lesion or a physical malformation of some kind. Yet, like with lesions of some kind, neither of those shows up in your imaging studies.

Another possibility is trauma, but surely you'd know whether you had significant trauma. So it appears that that one can be ruled out.

And then there's always the mysterious "virus." If something viral occurred 15 years ago that wasn't fully analyzed (or wasn't possible to fully analyze and document), it may not be possible to know exactly what happened, though it left lasting damage without physical signs. There was a French study of cranial polyneuropathy done about 20 years ago, and no diagnosis was established for 15 of 43 cases.

My main symptoms have always been the left side of my face, severe spasticity/contracture in my right leg/hip (have a pump for that now...yeah), left sided arm weakness, ...left foot is positive babinski. That along with minor bladder/bowel issues about rounds out the package.

If it's all in one package, might it be possible for you to "return to sender"?

[rdmc]

If it's all in one package, might it be possible for you to "return to sender"?

Wish it was, LOL. This package holds a puzzle and as much as I like to solve online puzzles, dealing with ones in real life (i.e. this pheo stuff and the cranial nerves) drives me bonkers. On one hand I'd like to just stop asking the questions, yet the physical problems like spiking bp won't allow me to let them go unanswered.

Thanks for all the info...I'm going to make an appt with my neuro, and see what she says.

[billiejeane]

Redwings,thank you so much for replying to my question.

[maitrimama]

CNV5

You guys know so much about cranial nerves I have a feeling this is a no brainer.

I have had consistant numbness on the right side of my face. It ranges from numbness to a cold tingling burning. My Ophthalmologist asked me several times where the numbness was located, it never varies from being my left cheekbone & just a little bit up around my eyesocket, the bottom part of my left nostril and lest side of my upper lip, never on the tip of my nose. The Dr took out a a chart of the cranial nerves and showed me how exactly it is CNV5 that is being effected but didn't say more than that.

Any ideas?

[rdmc]

You guys know so much about cranial nerves I have a feeling this is a no brainer.

I have had consistant numbness on the right side of my face. It ranges from numbness to a cold tingling burning. My Ophthalmologist asked me several times where the numbness was located, it never varies from being my left cheekbone & just a little bit up around my eyesocket, the bottom part of my left nostril and lest side of my upper lip, never on the tip of my nose. The Dr took out a a chart of the cranial nerves and showed me how exactly it is CNV5 that is being effected but didn't say more than that.

Any ideas?

The Trigeminal Nerve (CN V) has several divisions, and he's right, one of those divisions is purely sensory and responsible for feeling on your face and upper lip.

Here's a fun site, with pretty nice graphics. Pick out the cranial nerve, the click on each division of the Trigeminal Nerve...and you'll see what it affects.

http://www.wisc-online.com/Objects/V...spx?ID=AP11504

What do you use for the facial pain?

[maitrimama]

I realized that half the time I right of my face and the other half I said left side - I meant right side always.

As far as pain is concerned I have used some ibuprofen, I haven't even gone there with any doctors. Thank goodness I have a pretty high pain threshold.

The neuro I went to was very dismissive so I am seeing an Ophthalmologist because my visions problems are what concern me most.

[truckin]

Trigeminal and Eating?

I have difficulty managing food with my mouth--mostly my lips--like getting them around a sandwich. I can chew ok, but it feels strange--tongue works pretty good.

This happens throughout the morning until around lunchtime or a little after. I do have lightheadedness and my neck support muscles contract and sqeeze when I stand up. Lately I've had stabbing pain in either of my jaws and it goes up the side of my head.

I know there's a lot involved in chewing and eating. I've see both my PCP and neuro in the last month. PCP says my arteries sound good, and my neuro says if the jaw/mouth/eating gets worse.he'll do a swallow test.

How can these sx get fixed? I still have lesions only in the cerebellum ( since dx 6 yrs ago).

[rdmc]

I have difficulty managing food with my mouth--mostly my lips--like getting them around a sandwich. I can chew ok, but it feels strange--tongue works pretty good.

This happens throughout the morning until around lunchtime or a little after. I do have lightheadedness and my neck support muscles contract and sqeeze when I stand up. Lately I've had stabbing pain in either of my jaws and it goes up the side of my head.

I know there's a lot involved in chewing and eating. I've see both my PCP and neuro in the last month. PCP says my arteries sound good, and my neuro says if the jaw/mouth/eating gets worse.he'll do a swallow test.

How can these sx get fixed? I still have lesions only in the cerebellum ( since dx 6 yrs ago).

Don't know about fixing the symptoms...my cranial nerve problems were my presenting symptom back in '96, they've waned in intensity, but overall have progressed slowly through the years.

But about the pain you describe...have you talked to your dentist. Pain on both sides of your jaws could be a TMJ problem. TMJ problems will also not allow you to open your mouth wide, which would make eating harder. Don't know how they interact with muscles in your neck, but might be worth having it checked out by your dentist.

Hope you get some answers.

[Nancy T]

Sorry to bump an old thread... I haven't been here forever but browsed through and this caught my eye.

rdmc, I can't tell you everything except to say that I have had multiple unexplained cranial-nerve abnormalities (though no big problems except dizziness and hearing loss, the latter probably unrelated) and no lesions apparently seen on brainstem, although none of my MRI reports, ever, have gone into detail about location and size of lesions.

Starting in 1999 I had (and still have, to a lesser extent) electric shocks in my face on both sides (trigeminal), weird symptoms that seem to be some brainstem abnormality though not your typical one like double vision--rather, events on my left side (BPPV, squeezing with my left hand or moving my left thumb) causing stapedial spasms on the right side)--also highly abnormal AEPs on both sides. I also think I have some 7th nerve abnormality on the left. So, I think I have 3 cranial nerves involved, two of them on both sides.

NO explanations offered by docs whatsoever. MS seems to have been ruled out (neuro exam remains normal, MRIs remain with nonspecific spots, though on the last one the doc muttered something about a little more atrophy than would be expected, but he sent me away with no explanation for anything. (Never had a successful spinal tap--they just can't get fluid out of me...)

My sympathy to those who have serious CN problems. I had one bout of PAINFUL TN (I'm sure it was), long ago, and I can't imagine having it longer.

[rdmc]

I empathize with your situation. I started with the cranial nerve problems in 1996. I saw a lot of doctors with no explanation that explained the situation. At the time I had no deficits, ie my face and tongue still moved normally, it was just pain and sensory issues. I don't know if they didn't believe me, or what, but nobody ever suggested it could be neurological. Eventually, I just quit going to doctors or seeking an explanation.

In 2001, my legs quit working while having a high fever and severe UTI. That's basically what got the doctor's attention and led to my diagnosis.

Hang in there Nancy, hopefully one day you'll get an answer.

[Nancy T]

Thanks, rdmc... sorry to hear you are having so much trouble. Even without a diagnosis I feel lucky; I am still working, though only part-time.

And boy, cognitive trouble... I meant to write, I couldn't tell you ANYthing, not EVERYthing!