Tingling Painful Tongue - Neurologic (MS) or Vitamin Deficiency??

[Sarahsmom46]

I know this is a weird question, but I'd rather mention it to you guys before I look silly when or if I mention it to my neurologist.  

I have had this sore tingling/burning feeling on my tongue for literally months.  It has been more of a nuisance than at first, but now I am tired of not being able to taste anything and am miserable with it.  I have had this before starting Lyrica or any other drug, so that is ruled out.  And I have been on B12 supplements (nasal spray) for only a month and that hasn't made it go away...So, what could be causing this? Better yet, how can I make it go away?

Have any of you ever experienced this?  

Any ideas would be very appreciated.  Thanks.

:)Julie

[beachcomber13]

Hi there,

Welcome to the MS forum. This is an old thread, so you may want to start your own new thread by clicking "Post a Question" at the top. We would love to hear about you.

It sounds like you would like to see a neurologist. Let us know how it goes. :)

BC

[DMcN123]

For the past year I have had a tired and tingly feeling throughout my tongue.  I thought it as caused by dental work that I had done and I was moving my tongue around so much that it felt sore and tired.  A year has passed and my dentist doesn't believe my dental work has anything to do with it.  I don't feel paralysis anywhere, I get headaches aften but I'm guessing because my tongue is sore.  Any ideas or what kind of doctor I should see?  I'm so tired of this sore tingly feeling throughout every day.  Thank you.

[shanead]

Hi Sarahsmum

What you say is absolutely correct. For 17 years i also have vitamin B12 deficiency & have injections every 3 months. They're not lasting the 3 months as they should but my g.p. says she can't give me the jabs inside the 3 month period or i'll be overdosed.(I have to wonder about this) My symptoms of this is extreme lethargy, & sore patchy tongue.
But now for around 8 weeks, i've experienced a wierd annoying tingling sensation in my tongue, I don't have any pain but i do have on/off loss of taste. I recently went to my neurosurgeon for m.r.i. test results on my brain as i am showing signs of parasthesia in my hands and feet. These scans showed 2 white spots which were 'suggestive' of M.S. so now i'm referred to a neurologist for further tests.I will be mentioning the wierd feelings i experience in my tongue & wait the outcome. Could anyone tell me if there's a possibility of these sensations be related to M.S..

Thanks

Marion

[Sarahsmom46]

You have all given me such great information on the sore tongue.  When I posted the questions, I didn't expect many responses because I thought people might think it is a trivial issue - but it really isn't, its it!  The tingling is annoying and the numbness takes away the enjoyment of eating.  Maybe he will think it is a neurological symptom.  Who knows, but I'll let you guys know how it turns out.  

Thanks again soooo much for your great feedback.

Luv ya guys,

Julie

I see my neuro tomorrow morning and even thought it sounds trivial, I will mention the sore tongue.  Maybe he will let me have the injections now and stop the nasal stuff if my numbers didn't go up much.  

[Lauri8967]

Hi Sarahsmom -
Your welcome...like I said, Im not a doctor, but do have PA.  And just another FYI - your B12 does not have to be below the range.  Sometimes in the lower end is enough.  It has more to do with the lack of intrinsic factor, which prevents absorbtion, than whether the number falls below range.  Your number is still in the low end...Just something to think about.  Ive also heard from a few different neuros and other docs that the only really good way to get B12 in us is in infection form.  Im not sure if this is true, but its what Ive heard.  I know I felt SO MUCH better after getting the injections.
Another note - I dont think it has to be one or the other (Pernicious Anemia OR MS), I think you can have both...which then is even trickier!!  Always something....right?
Good luck and have a great evening
Love Lauri

[Terrie2008]

Hi guys

Quix had already explained but I was going to say I also have tingling both sides of the tongue and taste comes and goes  it cant be due to vit B as I have just got my results back for Vit B12 and it was clear.

[essdipity]

Yup, pernicious anemia is WAY preferable to MS. B12 injections, usually monthly, will often relieve all the PA symptoms. I've been tested for PA twice, once including a Schilling test, where you get some kind of B12, probably orally but I can't remember, and then save all urine for a day for testing. I requested this route because my grandmother died of pernicious anemia. As I remember, that's autoimmune too.

This past April I was tested again through bloodwork. My B12 level was 414, where 200-1100 is considered normal on Quest Diagnostics' scale. That's a pretty wide range, but if the results are accurate then clearly my B12 is fine. Darn.

Julie, I didn't actually report tingling tongue to my newest neuro, but I put it on my timeline. And past MRI orders have stated 'left-sided paresthesias,' which included this. I don't know if made any impression on the doctors, but I figured may as well be comprehensive. It didn't go away, ever, for more than 9 months, and may still be going on now underneath the Lyrica.

ess

ess

[Sarahsmom46]

Thank you so much for making that more clear.  I think I will mention this to the doctor after all.

Did you ever experience the tongue tingling and numbness?  Did the B12 injections help with the symptoms you have/had?  

My B12 was 205 when they last checked it.  The neurologist decided against injections instead asking me to do the nasal spray supplement first.  I will see my blood work results on Tuesday when I go in to see him to see if the nasal route is bringing up my numbers.  I would love to have my diagnosis be B12 deficiency and call it a day, but there are too many other things going on.  Time will tell.  

Thanks again Lauri. You comments helped a lot.

Julie

[Lauri8967]

Hi all -
I suffere from what is called Pernicious Anemia which is an autoimmune problem affecting the intrinsic factor in the stomach.  When there is a lack of intrinsic factor, your body cannot absorb B12.  This causes symptoms of burning/tingling tongue, dizziness, balance issues and stomach problems (diahrreah, etc).  The only treatment is B12 injections, which you can usually do at home to yourself.  Ive go to the hospital to have them done.
Obviously, this is the MS site, and all these symptoms are also related to MS.  Pernicious anemia is OFTEN misdiagnosed as MS, actually, as the symptoms are so similar.  You DO NOT have to be anemic to have this condition.  One usually is, but it is not necessary for Dx.  Nor does your B12 level have to be below RANGE (it usually is on the lower end, however).  Some routine tests run by your neuro can determine if you have PA.  It is common amoung us who have autoimmune diseases.
Just an FYI...
Love , Lauri
PS - As Quix noted, if the burning, tingling sensation is only on one side of the tongue, it would probably be more of an MS issue, and not a vitamin problem (..as it wouldnt respect nerve boundries..).  So the above info would only apply if the entire tongue was experiencing these symptoms.

[Sarahsmom46]

So, did they ever figure out what was causing it?  I am not sure whether to mention it to my neuro at this Tuesdays appointment or not.  It is really uncomfortable and has been hanging around this time going on 3 weeks now.  When you have it, does it go on day and night or do you get any relief while you are having an "episode" of it?  

Thanks for your feedback.  

Julie

[essdipity]

In '06 I had problems with tingling tongue for several months. It was only on the left side. Also had pain and paresthesias elsewhere in my mouth (gums) and neck, also on the left.

In '07 tongue tingling started again, this time on both sides and onlly towards the tip. Nothing else in face or head. I can't say for sure whether I still have that, because the Lyrica I've taken for several months does a good job. Just very occasional tingling in the tongue. No pain has been associated with my tingling weirdness in any case.

In '06 a doctor, not a neuro, who knows me very well commented that I was speaking with a slight lisp. I was only marginally aware of that. It lasted several weeks, as part of the tingling phenomenon. By the time I saw a neuro it had gone, so when I reported it, that gave him more ammunition to say I was basically nuts.

ess

[Sarahsmom46]

Then, is this a vitamin deficiency or a nerve issue?  

You are such a wealth of information.  Thanks.  

Julie

[Quixotic1]

Nix what I said above.  the cranial nerve involved is the Seventh Cranial Nerve.  This nerve's main purpose is to control the muscles of facial expression.  This is the one that when injured causes Bell's Palsy - drooping of that side of the face.  It does carry also, though, the sensory nerves which bring taste and touch from the front anterior two thirds of the tongue.

AND THE ANSWER IS:       The Facial Nerve, CN VII

I have got to get the HP done on the Cranial nerves!

Quix

[Quixotic1]

I believe this is a lesion on a cranial nerve more likely than a vitamin deficiency.  The localization leads me to this.  A metabolic problem like a deficiency would not respect nerve boundaries.  It would be more diffuse.  I'll look up the nerve in question, but I think it is the trigeminal nerve.  Be back later with the sure answer.

A cranial nerve is part of the central nervous system and would indicate a problem more like MS.

Quix

[Sarahsmom46]

Thanks Heather, Sally and Doc Quix for your comments.  We seem to all be still looking for answers.  I sure hope it is a simple answer that is treatable.  

I am wondering if it is worthwhile to ask the doctor to order a vitamin panel test to see if there is anything else that is deficient.  

Let's keep looking for an answer!!

Julie

[Sarahsmom46]

The numbness and tingling are on the tip and right side of tongue.  Sometimes it even itches.  I've had thrush a few times, but this doesn't look like thrush as there and there is no yeasty white coating.  This even affects my talking.   Any ideas?

Julie

[Quixotic1]

What part of your tongue is affected?  Toward the tip, on one side or farther back?

Quix

[Super_sally888]

Hi Julie,

I've had the same thing on and off for a long time.  Actually am having it at the moment.  My tongue feels weird and kind of tingly....

Could still be Vit B12 deficiency.  Some people need B12 injected rather than by spray or orally.  Have your Vit B12 levels been rechecked?  It is impossible to overdose on VitB12 so maybe try increasing the dose? Also, are you getting your other BVits?  I should look at that for myself....

Could it be food sensitivity?  Just an idea.  Does it seem better or worse with particular foods?

It could also be neurological....

Sorry no answers.... just some more ideas....

Sally

[Heather3418]

I have had the exact thing happen, but only on ONE side of my tongue at a time.  I have never heard of the whole tongue doing that, but think I read somewhere on the Forum that it can indeed feel like that.

Am anxious to hear what others have to say, as I have heard many members complain about the same thing.

Hope somebody can give you better answers than me.

All the best,
Heather