My GP thinks it’s due to the MS … Is this the case with anyone else? It did happen the first time with a flare. It’s horrible and painful I would appreciate any answers xx
No, I’ve never had this. Of course, MS is a hugely variable, so that doesn’t mean it couldn’t be some rare symptom, but I find it difficult to follow how a disorder of the central nervous system could cause a swollen tongue.
One thing that jumped out at me, though, was it can be associated with vitamin B12 deficiency - which for some strange reason seems more prevalent in the MS population - AND can cause similar symptoms.
I believe B12 is needed for the production of myelin, so it might just be that we use more, to try to keep up with the repairs.
I’m surprised a GP wouldn’t know about classic symptoms of vitamin deficiency, though, so I’m wondering if your B12 has been tested and found to be OK, which is why it’s not a suspect in this case?
Hi very odd and strange, my husband has been complaining of swollen and sore tongue now for days. He has COPD and does smoke. I have booked him to see doctors, I think its either his meds, or his is deficient in some sort of mineral etc as he doesnt eat well. Actually B12 could the about right as he doesnt eat very well…
one of my relapses included a swollen tongue a few years back now , the trouble is that it probably feels a lot more swollen than it is , I remember my tongue had little to no movement at the time , it slowly resolved on it’s own in the end (by moving to another bit of course)
Could it be a blocked salivary duct. I had one about three years ago. Swelling lump back left (for me) from the tip. It eventually went down but had biopsy taken. I presume it could result from MS as a result of excessive nervous stimulation of a salivary gland overwhelming the duct, or possibly more likely as a result of accidental bite to the tongue.
Wow thanks guys, interesting responses.
Anitra I thought the same as you to be honest but the swelling did come on with a flare which was bad for about 3 days en seemed to go down a little only to swell back up.
Golden girl it’s surprisingly uncomfortable, mine was so swollen I had teeth indentations round the sides of my tongue where it was crammed against my teeth lol…get the hubby off to the docs she gave me me antibiotics as it had split and become a little infected which was adding to the misery and some difflam to deaden the feeling.
mrBoBowen this sounds quite similar…do you also have any swallowing difficulties? I must admit I wondered if I had bitten my tongue or as you suggest over production of saliva as I did seem a little drooly…I’m a positive babe really …
Achord…thanks yes it definitely arrived with a relapse and is clearing itself now I’ve got some medication to heal the splits and infection that subsequently happened. I too feel a little like I can’t quite control my tongue and was struggling to articulate some words which was why my GP seemed convinced it was the MS.
thanks it just goes to show what a pot of experience you all have! Xxx
Do you know what angers me? It’s GPs being so quick to blame every strange problem as an ms cause, rather than persuing other reasons. Arrrgh!!! We may suffer with ms and yes most of the time the problems we suffer are due to it BUT not all… We’re still infallible and become ill like anyone else!! Rant over…
Sorry I replied en masse to everyone… Your description sounds very like what happened to me. Have you also had problems with swallowing ? Thanks so much for replying xx
Thanks John, I thought at the time it happened it was part of the flare but it seemed to resolve within 3 days and then it suddenly came back up again, split and got infected so I was a bit unsure as to whether it was the MS. I actually think she’s probably right…thanks for answering I’m pleased to say it’s on the mend xx
I think as I was telling her other new symptoms had come up with that flare she felt that possibly a new area of inflammation was occurring, intend to think she was right. I’m pleased to say it’s going now she gave me some antibiotics and difflam spray. I think you’re right to say it isn’t always MS but it does seem to be that it is quite often the culprit
my swollen tongue was accompanied by speech and swallowing problems too , plus a few other things !!
The problem with that theory is that MS, as I’m sure you know, is inflammation of the central nervous system (brain, spinal cord and optic nerve).
Your tongue isn’t part of the central nervous system, by any stretch of the imagination, so how could CNS inflammation make it swell?
I certainly understand the posts that suggest sensory changes in your tongue might make it feel swollen - but that doesn’t seem to be the explanation in your case, as you are very clear it doesn’t just feel swollen, but definitely is. The suggestions that if your tongue was numb or had restricted movement you’d be more likely to bite it also sound plausible - but again, it doesn’t seem to fit your case, as I think you’d know if you were accidentally biting it, even if it was numb, and I also think your GP would be able to distinguish bite marks from general soreness - it should be easy to tell if the sore patches correspond to areas that could get caught between your teeth.
If it’s the MS doing it, what I fail to understand is the mechanism of how. Unless, it is, indirectly, the vitamin B12 thing. If there was a sudden surge in your body’s demand for B12, because you’d developed CNS lesions that needed repairing, would that result in symptoms of deficiency elsewhere, because ALL your available B12 was suddenly being diverted to make new myelin?
This is a bizarre disease indeed. Also an interesting disease, only I wish to heck I hadn’t had to learn about it by getting it!
if I remember rightly (from my wasted school years) the tongue is a muscle ? or is it ? , anyway if it is ? it must be as prone as our other muscles to spasms , and when the muscles go into spasm they always feel , and I’m sure mine seem to get bigger ,
so many mysteries though aren’t there ? , even the airflow through my nose just gets shut on or off at it’s own will , usually gets shut off when I can’t swallow (just for maximum inconvenience ) and in the early days just to enjoy my mini panic it would have seemed
what a strange and weird thing to get “used” to ?
p.s. I remember my tongue getting (or feeling) so big I couldn’t get it down from the roof of my mouth , or maybe I just couldn’t move it down , I certainly didn’t have control of where it wanted to be
You know I never thought about it that deeply before. I had swallowing difficulties early on and went to be assessed by speech and language therapy to get assessed. They diagnosed me as having something like a slow pharangeal elevation?. Basically it takes me several attempts to clear my mouth. I was also sent for a physical check with an ent specialist to check that there was no physical impediment and he said no it must be neurological.
Therefore I assumed the same this time it was entirely possible … Gosh I can’t wait to ask the neuro next time. I will message you x
Gillymilly1 I have had brief periods of swallowing difficulty but don’t recall any association with the blocked salivary gland and I am not diagnosed.