Nerve EMG NCS testing

[fx9898]

Has anyone done any nerve tests that show damage due to a b12 deficiency?

[Cherylclaire Forum Support]

I was sent by a neurologist for electric nerve testing to arms, hands and legs, feet. Nothing was found to explain the numbness and tingling, the complete lack of feeling in arms when injected with B12, but mainly numbness to outer area of both shins or the sudden sharp shooting pain from soles of feet up legs. I called this last Pricklefoot - and could best be described by comparison with jumping off a wall barefoot onto a hedgehog (although I obviously haven't ever experienced that). Eye-watering. Also I recall having problems with biting my tongue often when eating.

This strange but pain-free testing ruled out a problem with any of the main nerves. Good response in all limbs.

This condition once, later on, resulted in foot-flop; I realised that I was tripping over familiar things like the back doorstep, and having to lift my knees higher and higher to get my foot over the obstacles. I was beginning to feel like a rather bruised Ronald MacDonald ! Luckily this did not continue or develop into anything frequent/serious. Who wants to be a clown ?

There are other tests that you can have for more minor nerve damage - but these are more painful as they involve removal of nerve sample for testing, I believe.

Luckily, frequent B12 injections gradually improved feeling in my outer shins and I do not get any pains or numbness now. I don't trip up or bite my tongue either. I think nerve problems for me were caught sufficiently early on to be able to get recovery from B12 injections.

[Raven_Cat in reply to Cherylclaire]

Wow Cherylclaire, you have just alerted me to a new thing I have been doing occasionally over the last few years. I bite my tongue out of the blue, and wow it hurts, its not a nibble, its like a random thing that has the force suggestive that I wish to remove my tongue, but have no concept where it is in my mouth to avoid this.

[Cherylclaire Forum Support in reply to Raven_Cat]

Yes, exactly that same feeling. Like I'd chomped right into it.

By the way, I was told fairly recently that my constantly burning tongue is due to nerve damage. It is also now on record as officially "beefy" - since the Oral Medicine people had to abandon plans to x-ray my gums due to being unable to depress it !

Beefy ! I ask you !

I prefer to think of it as "irrepressible" myself.

[Rolloliveson in reply to Cherylclaire]

I had a similar issue trying to get my tongue down so that they could get the gastroscopy scope into my stomach. I got the impression they thought I was a bit dense. It was a couple of days later that I noticed my tongue has a scalloped edge (I believe it's also called a pie-crust tongue) where my teeth had made indentations as the tongue had slowly begun to swell. There is also something called 'geographical' tongue, where patches appear which look a little like a map. They all seem to be presentations of glossitis, of one sort or another. B12 deficiency - the gift that keeps on giving!

[Cherylclaire Forum Support in reply to Rolloliveson]

Yes, used to have a piecrust tongue daily - now not nearly as often.

Cornish pasty, anyone ?

[bookish in reply to Cherylclaire]

Sounds as if our nerve damage pattern was similar, although I also had thermal threshold testing which was used to diagnose small fibre neuropathy. The biopsies are not available everywhere and not used here. But I think B12 is helping with that too. Hoping for more progress.....

[Cherylclaire Forum Support in reply to bookish]

I felt lucky by comparison with others here who have struggled with nerve damage, particularly affecting walking as they cannot feel their feet.

Also lucky that what little I did lose I got back eventually. After 3 months of two injections a week, I finally felt the nurse doing it. I didn't have to ask if she was done yet ! It was right on top of Christmas, and felt like a present: I really was finally getting better.

Did not have small fibre testing of any type.

The problems I had with walking were more about muscle deterioration and fatigue : walking back up the hill with shopping would take gritted teeth and hours and hours, forcing legs to move and keep on moving.

Now only really get stiff feet, which prevent me from jumping down off even a small height - from a chair for example. It's an ungainly sight !

[bookish in reply to Cherylclaire]

The variation in symptoms and severity between people constantly surprises me. At least we all improve, even if it isn't total.

[Nackapan in reply to bookish]

For me my nervous system was n overdrive so more sensitive to pain ,noise ,light.Every sense heightened.

Couidnt bear hearing a present being opened . Thd sound of tearing paper hurt my head so much it was unbearable .

The basisc reflex tests the neurologist did were described as very brisk.

I still have a heightened nervous system.

Also a vestibular disturbance.

Damage i was told to the cerebellar part of the brain and on the first brain MRI . Heightened T2 signals .

Inflamation and myelation seen.

My drop feet gone .

Tending to stay upright .

Less clumsy and less tripping as seem.to know where my feet are now !

[bookish in reply to Nackapan]

I'm so glad that you too are making progress! I wasn't quite as extreme, and my senses are less fraught now, but noise, light, pain, vibration, windy weather, pressure dropping are still a bit of an issue. I used to jump at everything and then shake. They said signs of neuroinflammation and myeloneuropathy. Ditching gluten helped enormously and that affects cerebellum particularly. I started with almost absent reflexes then a few years later was brisk! Best wishes

[Cherylclaire Forum Support in reply to Nackapan]

The heightened senses - not to the extent that you have it - but yes.

I would find it difficult/ impossible to "phase out" peripheral noises, so could easily lose the thread of any conversation if the TV was on or their were people in the background: a bus-stop, cafe impossible - a supermarket pounded all the senses all at once - leaving me exhausted.

Peripheral movements literally "unnerved" me ! Found it confusing when walking past a bus-stop and a nearby stationary bus started to ease out into traffic. Found small unexpected movements did not compute. A clothes rail that was ceiling-hung rather than a floor-based rack threw me completely. I think this was about constantly using stationary verticals/horizontals to prevent dizziness - as these incidents brought on dizziness and feelings of nausea. The "staying upright" thing, but far less obvious in me.

Smells got confusing too - very much stronger, but also identification problems.

A lot of this felt like my brain was struggling to keep up with what was presenting around me, slow to work out quite ordinary environmental changes.

The only one that still causes me occasional problems now is the trying to concentrate on the one voice in front of me -and finding competitive conversations drifting in ! Choosing the right time of day, the right day of the week, the right table in a pub or restaurant can help me, so no huge issue. Outside obviously less of a problem - so roll on summer !

Today looks promising....

[Nackapan in reply to Cherylclaire]

Yes and ighter evenings so no artificial lights needed .Definitely easier being in the middle of a field lol 😆

Heightened senses no fun .

Wears you out .

'Supermarket ! Syndrome .

[Cherylclaire Forum Support in reply to bookish]

You can see why GPs find it difficult.

[elr_ctr]

I had this done at about the same time I started injections. I failed more than half of them in my legs. After injections for a while, a lot of tingling diminished or disappeared, but has started again. I’ve always wanted to have the test done again to see what might’ve healed.

[Sleepybunny]

Hi,

Despite many neurological symptoms eg tingling, pins and needles, muscle twitches, periodic limb movements and others, I never had electric nerve testing or a skin biopsy for SFN (small fibre neuropathy).

"I think this was about constantly using stationary verticals/horizontals to prevent dizziness"

"Less clumsy and less tripping as seem.to know where my feet are now"

"but have no concept where it is in my mouth to avoid this"

I'm wondering if these are all examples of problems with proprioception.

Interesting articles if you search "Proprioception B12 deficiency".

[Perniciousgirl]

Hi there. Yes, I had nerve conduction tests which revealed small fibre neuropathy & autonomic neuropathy ( which had already been confirmed by tilt test) suspected to be from b12 deficiency which turned out to be PA.

[Myoldcat]

So I've just had nerve conduction testing for carpal tunnel syndrome (which was ruled out) but it turns out I have nerve problems in both arms, with pain, weakness and muscle wastage. Awaiting a cervical spine MRI in a couple of weeks. I'm concerned as these changes have happened since staring injections.

But before diagnosis and starting treatment I was kicking the kerb because I wasn't lifting my foot high enough, and my left ankle reflex had completely disappeared. In the months after starting eod injections, like Cherylclaire I had sharp, shooting pains in my shins, the most excruciating ever! Especially on the left side...turns out the reflex has reappeared, so the pain was nerve healing. Neither gp nor neurologist were excited by this news, but of course I'm thrilled!

Like many others, my nervous system is still easily overwhelmed by too much light, noise, and movement, but has improved over the last 15 months of treatment.

Hopefully this will continue 🙏🏼

[Dance_queen]

Yes I had a NCT last October and they diagnosed me with severe carpal tunnel syndrome. I had started taking B12 supplements so the tingling and numbness in my hands had already improved but now, 5 months on, I only rarely get numbness at night and the tingling has gone. I wasn’t told if it was small fibre damage or otherwise.