I have been told that I have had an episode of Transverse Myelitis that has possibly re-occured, so I am being monitored and under the care of an excellent neurologist. I do sometimes experience some burning on the right hand side of my face and tongue numbness. On occasions the tongue numbness is really bad but usually not long lasting but of late often my tongue on the underneath but just feels numb or like pressure or tight sensation. When this occurs I seem to have some type of head pain but more like a random shooting pain. I do sometimes get vertigo with my headaches as well and on occasion I have vomited when I have had had a headache at the back of my head (base) near neck. I find all this seems to be worse when I am experiencing a flare of my other symptoms
When I discussed this with my neurologist (at that stage I had only experienced one episode of tongue numbness) ,he said it was migraine, I rarely get headaches that cause pain or require medication, I am not sensitive to light, noise etc. I am currently taking Gabapentin 900mg per day for nerve pain, pins and needles, burning etc.
Is there anyway I can prevent this type of migraine from happening as the tongue numbness is happening more frequently in the absence of any real head pain? But sometimes I do get some pain.. I hope this is making sense. There has only been two occasions where the tongue numbness has been severe enough to prevent me from talking.
So why am I getting migraines?
The tongue thing is happening more often (tightness or funny feeling on underside of tongue.
Can I prevent them?
Is the tongue numbness something to be concerned about?
Thank you in advance for hopefully answering my question.
By the way I reside in Australia.
Oh damn I thought I had got this in the freebies to Dr Kantor... ( I thought I had hit the jackpot and got a free question in.
Oh well if any of the knowledgable people out there know the answer to my questions please fire away, as I love to talk, chat etc. and the tongue numbness is very frustrating at the moment, feels weird.
Hi, I have tongue numbness too, would describe it as a burning a lot of the time.
I see you are from Australia to, if you like your Neuro can you let me know his or her whereabouts as I have seen three already and I wouln't rave about any of them.
I think I notice my tongue more when I am tired, but it is there most of the time, sometimes it feels like it is swollen,but even though I know it is just the sensation of being like tha,t it can be quite frightnening at times.
Sorry you missed the 'window' for posting in the expert forum.
Tongue tingling or numbness is common in MS, as you probably know. My tongue has been tingling, usually very lightly, for almost 2 years, to the point where I don't even notice it most of the time. Yours sounds much worse.
Is this the same neuro who diagnosed you, and whom you like a lot (I think I remember that correctly?). I think you need to contact him again, or someone else. Migraines can cause a lot of weird symptoms, but I've never heard of tongue numbness being among them. Have you researched this at all?
You could well be progressing to diagnosable MS, so don't hold off too long in seeing someone.
I did mention to my neuro in the early part (second visit with him), about my tongue and facial burning and numbness and he said that he thought it was migraine that was caused or coming from my cervical spine. When I had my visit with him a couple of weeks ago he mentioned the brainstem (he has never mentioned this before) and I was surprised he did and wish now I had asked him why he thought that. (Did my reflexes show that?) He is repeating the MRI including brain as well as spine because I still seem to be having on going symptoms that are not settling at the moment but because I have had two MRIs not that long ago within a short period of time (neither of the brain) he is monitoring me and to go back sooner if I think things have deteriorated, well if I have or new symptoms etc.
but I never bothered mentioning the tongue sensation this appointment as I was in there way too long anyway :-) and thought it wasn't connected (as a past appt. he said migraine) but I am finding it very annoying and weird at the moment but I am sure it's migraine related as I get the shooting pains (that aren't really long enough lasting to be painful in the top of my head when I seem to have this. Not sure though if my migraines are related to my TM.
My goodness we all have some weird stuff don't we? No wonder we need forums like this vent, ask questions or just feel better.
This does feel like a migraine type but mm my other symptoms have been terrible with this but nothing new.
Derk I will private Msg you with the name of my neurologist.
I just did a quick Google and the very first thing I came to was this from neurologychannel *******.
Migraine with aura is characterized by a neurological phenomenon (aura) that is experienced 10 to 30 minutes before the headache. Most auras are visual and are described as bright shimmering lights around objects or at the edges of the field of vision (called scintillating scotomas) or zigzag lines, castles (teichopsia), wavy images, or hallucinations. Others experience temporary vision loss. Nonvisual auras include motor weakness, speech or language abnormalities, dizziness, vertigo, and tingling or numbness (parasthesia) of the face, tongue, or extremities.
Yes I get the shimmery stuff with my eyes and have lost vision completely, I have also had vertigo and the face tingling, sometimes my scalp tingles too. I am certain it's migraine but I was hoping to ask Dr Kantor about it because he specials in migraines.
I did ask my neuro (every visit in fact) if all my problems might have been contributed by migraine aura but he said NO every time. Migraines apparently cause the numbness down one side of your body and not all my stuff fits migraine and my reflexes indicate upper motor.
My stomach (below my naval) and butt feels prickly all the time at the moment, very annoying but this is my TM symptom not my migraine...lol but it won't go away but the Gabapentin helps.
Yes Ess the forum is very educational.
Hmmm. I don't have a feel for how often you get the tongue numbness or weird feeling. Is it everyday? Is it currently lasting longer?
The face burning and tongue numbness could all be a paresthesia of the Trigeminal Nerve. This is Cranial Nerve V and the third branch, the Mandibular branch, handles the sensation for the lower face and lower structures of the mouth, including the touch sensation of the anterior 2/3 of the tongue on each side and the special sensory input of the taste in the anterior 2/3 of the tongue, plus sensations of the lips and gums. There is no taste on the underside of the tongue, but if you have some numbness it would beel the way you describe and fits like a glove with the sensation of facial pain or burning.
The way you are describing it would not be full-blown Trigeminal Neuralgia, but clearly is affecting the Trigeminal nerve. That would possibly be why the neuro mentioned the brainstem. The Trigeminal Nerve arrises from the brainstem.
I'm not saying that this couldn't be from a migraine, but what you are describing is so specific for the area served by the Trigeminal Nerve that it makes me suspicious for a brainstem lesion.
Yes, your reflexes - if abnormally brisk - do indicate an upper motor neuron problem and localize to the spinal cord.
Your comments about learning from the forum please me sooooo much. Thank you. Just be sure to ignore any comments I make regarding the laws of physics. :))
I have had Trigeminal Neuralgia in the past (incredibly painful), had to take Tegretol to help with the pain but that was years ago and didn't feel like this at all. Infact I have never mentioned that to the Neuro as you only have a certain window of opportunity when you have a consultation and you like to focus on what is troubling you at the time of your consultation and I had decided that Trigeminal Neuralgia can affect people without MS etc. and because I had only ever had one episode (THANK GOD) and it was so long ago when I was going to my old Neuro I just failed to mention it.
If I was to go back now my tongue probs would be on the top of my list. In answer to your question it is present all the time, very off putting, puts me off talking at the moment (I can see my hubby breathing a sigh of relief) as he can watch his fave movie in peace and quiet, I do usually talk alot... :-) My prickly feeling in stomach below naval in present all the time too, my nerve pain comes and goes in my legs, and yep I am getting numbness or burning in my butt or should I use the new American word I learnt on this forum Kiester. My tongue feels weird but it is worse when I move it, feels tight or something underneath, the vein thing that runs thu the centre of your tongue, that feels funny around that area... (love my tech talk).
I don't have any headache right now, but I do have symptoms... as for my reflexes I have hyperreflexia I think, clonus, positive babinskis, don't know with the rest of the stuff but he (the Dr never mentioned brainstem before always the thoracic, so...not sure what made him think that as he sort of said my tongue and face was from migraine but my other problems weren't. I keep thinking all my problems could be from migraine seeing nothing shows on MRI to confirm that I do have lesions but the neuro reckons they are there.? My left leg does feel weaker so I guess something must be going on..
Your latest health pages are great. Gives us information to ask the right questions or seek help when needed.
Udkas. (by the way Udkas is Duck in Russian.
If the feeling is pretty constant I would not lay it to a migraine,
I found that after my TN resoloved I was left with a damaged nerve and have all sorts of nasty feelings in the nerve.
I was trying to say that what you were describing was not TN, but was still the Trigeminal nerve acting up. A good neuro would recognize that the nerve you were describing would be from the brainstem. He needs to know that the nasty feeling you are having is now constant and not associated with a headache.
I think having migraines muddies the picture and I bet those with migraines have a more difficult time getting diagnosed - if indeed they do have MS.
Thanks for the input, I don't think my Neuro has discounted out MS altogether. He said originally that because I had gone so long without progression and normal MRI and LP that he didn't feel it was MS and that my symptoms and clinical exam findings pointed to a single episode of TM but because now I have had flare up and some progression he did say to me that TM could reoccur and I should be grateful that it;s not showing on MRI but it's still there. You can get acute attack of TM, sub acute etc., but he said my symptoms were suggestive of TM, and originally he said perhaps I was just flaring old symptoms when I get hot, tired etc. but it was the vertigo that made me seek a Dr in the first place and the prickly feeling in my stomach and butt as they were new symptoms along with numbness in my groin and pubic area etc. along with old stuff like the burning etc.. but I had gone years with only a few symptoms when I had infections etc. and now they have come out of nowhere again... with new ones thrown in and worsening of old stuff.
So I take the view that if something shows on MRI it has got worse so that's a bad thing. He did say this visit which was only a couple of weeks ago that next time he would like to do my brain again because I am having on going symptoms, so on that take I am assuming that he hasn't totally ruled out my TM turning to MS.
DUMB QUESTION HERE?
My last 2 lots of MRI were of the cervical, thoracic spine (does the brainstem get shown in this picture?) If not it has been about 2 years I reckon since that has been imaged and it was never done with contrast. But my spine was done with and without Gad. Also is brainstem lesion still count as TM or does it then become more MS? I thought TM was spine only and MS can be brain and spine and obviously TM is longer lesions etc. ..
I must admit I think the tongue thing has gone on too long for it to be migraine, I know before when it went really numb I did get a migraine only hours later, but this is different, it is more just underneath. My neuro thinks my migraines are from my lesions, caused by them but there is no evidence of lesions...so then I wonder is it all migraine...:-) nothing is easy in neurology..
Thanks Quix, you always come up with good info and your input is much appreciated.
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