Is this ms?

Everyday living
1

Hi all

a wonderment really…

I have been diagnosed with MS for 10 years. In all of the time I can remember I periodically get this really intense stabbing (almost like an electricity ice pick) pain, running from behind my ear in the gap before my jaw down my neck. It’s really intense and can happen multiple times in a row over a few days but only for maybe 20 seconds to a minute each time . It might not happen again for weeks / months then I kind of forget about it.

its never occurred to mention this to anyone and only just now I’m thinking, is this to do with my MS? Anyone know of anything similar?

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i really don’t know.

but i wouldn’t be surprised if it was your ms.

mine likes to play with me.

if i’ve been feeling well for a week or two, it must think “oh she seems to have forgotten about me, let’s show her!”

a friend who has had ms for longer than me says that i should show it some respect!

at that point i have an attack of tourettes!!!

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Thanks for the reply. A decade later and still full of surprises…

What confuses me is just why I haven’t connected this ‘weird pain thing’ with MS before now - it’s like , yes! Of course that would make some sense! :slight_smile:

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Trigeminal neuralgia, maybe? (Often found with MS, but can affect otherwise healthy people for no known reason).

It’s known to be an exceptionally severe pain that is sometimes dubbed: “the suicide pain”, because some sufferers have killed themselves or expressed thoughts of killing themselves over it.

Some people mistake it for a problem with their ear or their teeth - even to the point of having a lot of futile dental work done.

I don’t think the pain necessarily has to be continuous or long-term. Have a Google and see if it fits.

I think I’ve had it just once, but it was before diagnosis, and I had no reason to suspect I was ill. I went to bed one night feeling normal, but woke up in the night with the most throbbing, pulsating toothache - BOTH sides. I gather this is unusual for TN, but surely even more unusual for toothache, as why would you go to bed fine, but in a matter of hours, develop excruciating pain, both sides, in teeth that were not previously playing up at all?

Anyway, I staggered to the bathroom, emptied the cabinet of any and all painkillers that could be safely taken at once, and returned to bed, thinking dimly: “Looks like I won’t be going to work tomorrow!”

Incredibly, despite the pain, it seems I then managed to drift off. Waking up at the usual time, there was no trace whatsoever of the previous night’s severe pain, and I even wondered if it had been a very realistic type of nightmare, as it seemed odd for such a severe pain to turn on and off like a light, with no warning and no after-effects.

I wasn’t diagnosed with MS for some time, and it was only then I began to wonder if I’d had a single episode of TN.

Other than this forum, I’ve never bothered to mention it to anyone either. It didn’t seem worth it for something that only ever happened the once, lasted a matter of hours, and was way before diagnosis.

Tina

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1 Like
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Thanks Tina. I’m fortunate in that , while very intense, it’s always brief so there’s an end to it (unlike most other MS symptoms) I’m pleased I haven’ t had it for a long period and sorry you did! It’s such a weird sensation though - hard to describe

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Advent greetings,Starling… The other replies are right on the money and to add my chocolate tuppence worth I’ll say that we all have our own version of Mysterious Symptoms and that is part of yours.If it doesn’t bother you greatly when it isn’t happening then it sounds like something to be aware of and that’s that.I doubt very much if there’s anything serious out there with the same symptoms.

Wb

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I too get an intense pain from under my ear down to my neck it hurts like mad, sharp weird achey pain, then it goes. I have had TN before now, so it could just be another nerve pain lol.

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Hi when I was 12 I had surgery on my ear and ever since then a lot of years later! Lol I get this pain that you are describing and like you say it can come and go with many months in-between it is like a snap stabbing pain or like a nerve been nipped I learned that this was usually an indication of an ear infection if it happened for a few days. When I told my doctor this he advised me to tap behind my ear when this happened!! (Where the pain was) sounds stupid I know but actually it worked Roth giving it a go you never know it might help

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Thanks for all of the responses. Nice to have an idea what this is (or could be) after all of this time. I’m pregnant at the moment which seems to set off a load of ‘symptoms from days past’ like a whistle stop tour of MS but like on a miniature scale.

i like the acronym of ‘Mysterious Symptoms’ the only other person I know with MS is my dad who finds it very difficult to articulate what is happening. Everyone else you talk to I think there’s a real feeling that what you’re saying sounds really wacky like ‘you know when you put your neck down and you get an electric shock up your spine…’ And so on.

The body is a weird and wonderful place!

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You have prompted me to read more about it - although I’m not especially worried, with it so far only being the once.

Interestingly, it said that although bilateral presentation is rare, clinicians should be aware it’s a possible red flag for multiple sclerosis! So I may not be such a freak as I thought - rare, but not as rare for us lot!

I says it’s a sudden, brief, stabbing, recurrent pain. It says the pain occurs in paroxysms which can last from a few seconds to a few minutes, and frequency can be from a few a day to hundreds.

I think my experience still fits, because I would definitely characterise the pain as throbbing or pulsating. So I might have been having hundreds of these “paroxysms”, but each lasting only a few seconds, which would explain the pulsating sensation.

With hindsight, I think I’m pretty lucky I never went to the doctor about it, as anything consistent with MS could have voided my critical illness cover, which I’m sure I only took out later. In general, I don’t think it’s good to be like me and never go to the doctor, but for me, it did have its compensations. Because I’d never paid any heed to these one-off happenings, and certainly hadn’t leapt to the conclusion I was ill, nothing in my medical records hinted that I might have multiple sclerosis, or be at higher risk of it.

Tina

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