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Massive spasms? Almost Seizure but awake. Could it be B-12?

5vejil profile image
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Does anyone else have spasms so bad you can’t stand and flop around on the floor? It’s engaging my full spine and arching me up then slamming me down. Sometimes will twist upper half to side. My right leg will constantly kick during it. Sometimes it will engage my other limbs but not often. I have even had my spine muscles give out and I slump over (people around me thought I passed out because I couldnt talk or open my eyes but I could hear. When I’m not having an episode my day is filled with twitches and jumps all In my body. Even my stomach, chest and other organs feel they thump/jump. 5 years ago this happened and I lost my speech. Went a whole year before someone said I needed b vitamin. It stopped it but now 4 yrs later it’s back. I take 500mcg of B-12 and my blood serum says over 1,000 so they said it’s not that. But the symptoms are so similar. My sister was told she has B-12 anemia when she went to donate blood. Could I have that? Is it genetic? I’ve had general blood panels, MRI and autoimmune blood tests done.

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5vejil
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Gambit62 profile image
Gambit62Administrator

B12 anaemia = macrocytic anaemia cause by cells in your bone marrow not having enough B12 to carry out the process that creates healthy red blood cells with the result that they are larger and rounder than normal.

Ironically people with high serum B12 can still be B12 deficient at the cell level - something about the high serum B12 seems to kick of a reaction that makes the process for transferring B12 from Blood to cells much less efficient. This is called functional B12 deficiency.

You could ask for MMA and homocysteine tests as these are secondary indicators that can show if your cells have enough B12 to recycle them properly, but these need to be done in a context that rules out other potential causes for raised levels.

Restless leg syndrome can be caused by B12 deficiency (neuerological effects), but it can also be caused by a number of other things going on.

Do you have other symptoms of B12 deficiency?

pernicious-anaemia-society....

If you want to get a diagnosis of a B12 absorption problem - which is what this forum is really about - then you would need to stop supplements for 3-6 months - possibly longer - before testing. To be honest you would probably need to do a few tests, at least a month apart to see if there are then significant drops in levels ... and even then it might not be conclusive.

5vejil profile image
5vejil in reply to Gambit62

Thanks. I do have other symptoms. Anger swings, dry skin, mouth sores, can’t sleep, vertigo, dizzy, constant fatigue.

Gambit62 profile image
Gambit62Administrator in reply to 5vejil

as fbirder says the pattern of seizures isn't typical of B12 deficiency so you should be open to other possibilities

suggest that you ask for the clarifying tests and/or refrain from B12 supplementation for several months and then ask for retests. Unlikely that you will get a trial of B12 injections but if you can that would be another way to go.

5vejil profile image
5vejil in reply to Gambit62

Thanks again. It just seems strange that b vitamins stopped these same symptoms 5 years ago on me. That’s why I thought it was a b problem.

Gambit62 profile image
Gambit62Administrator in reply to 5vejil

its a possibility but at this point in time not the most likely possibility.

fbirder profile image
fbirder

No. Those seizures are nothing like any recognised symptoms of a B12 deficiency that I've ever heard of.

JanD236 profile image
JanD236

That sounds like some sort of seizure and certainly needs investigating sooner than later. I’d be pressing for an early referral to a neurologist.

5vejil profile image
5vejil in reply to JanD236

Thanks. I have been to one. He has no idea what it is.

Sleepybunny profile image
Sleepybunny

Hi,

There may be some useful info on these websites about b12 deficiency.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Spasms

I had muscle spasms every now and then affecting random parts of my body. Those affecting muscles between my ribs were particularly painful and would sometimes make me drop to the floor in pain.

Thankfully B12 treatment stopped most of the spasms; only happen very occasionally now and no longer affect muscles between ribs.

Dystonia

There is a neurological condition called dystonia which can lead to uncontrolled muscle spasms and parts of body being twisted into unusual positions.

NHS link about dystonia

nhs.uk/conditions/dystonia/

I have read of cases of dystonia and other movement disorders being associated with B12 deficiency.

ncbi.nlm.nih.gov/pubmed/248...

nejm.org/doi/full/10.1056/N...

The Dystonia Charity (UK charity)

dystonia.org.uk/

Restless Legs Syndrome RLS can lead to jerking legs ( periodic limb movements) and can affect other parts of body

nhs.uk/conditions/restless-...

I've read that it can be associated with Iron, B12 and/or folate deficiency.

There are RLS forums on HU.

"I have been to one. He has no idea what it is. "

Have you asked for a second opinion?

Perhaps you can be asked to be referred to a neurologist who specialises in movement disorders?

I am not medically qualified.

5vejil profile image
5vejil in reply to Sleepybunny

Thank you so much for all the info.

HypoHden profile image
HypoHden

Unsure about PA, however there have been many cases of people controlling seizures with a ketogenic/carnivore diet

5vejil profile image
5vejil

I may have to do that. Thank you

Singoutloud profile image
Singoutloud

My son now 15 has had 2 tonic clonic seizures a year apart from each other. Both times A & E tested B12 and both results were below range so not convinced it is anything to do with epilepsy. He is now on B12 injections so time will tell if he has another seizure

Foxtrot89 profile image
Foxtrot89

It sounds a little bit like non epileptic attack disorder.

Are you aware the whole time what’s going on? Despite the fact you can’t control those movements (but you said you can hear).

Doo you take the other co factors to ensure B12 can do its job properly?

Amongst other things, both Vitamin D deficiency and magnesium deficiency can cause seizures (and I think when using high dose B12 these can sometimes become depleted more quickly).

5vejil profile image
5vejil in reply to Foxtrot89

I am awake the whole time. My spine stiffens straight out along with my legs. Then it starts spasming. Causing me to convulse, rock back in forth, kick, all kinds of stuff. My spine gets so stiff it really hurts. I do take a multi b with all active forms. I also take 330-800 magnesium citrate. I don’t take D though. I didn’t know that B-12 effected that. Thanks. I’ll try taking some.

Foxtrot89 profile image
Foxtrot89 in reply to 5vejil

I would get a vitamin D test if you haven’t had it tested recently. If it’s low you’ll need a large dose to correct a deficiency, but if it’s at a good level you can actually take too much. It is fat soluable so isn’t excreted like excess B vitamins, which are water soluable.

Up to 800mg of magnesium is pretty high. I don’t have a huge amount of knowledge on it but I thought 400mg was the RDA. Couldn’t taking too much result in an electrolyte imbalance? (Which could cause a seizure?)

Saoirse2016 profile image
Saoirse2016

I've had problems with muscle spasms, and limbs jerking, very similar to what you describe, I'd get woken at night when one or other of my limbs would flail, and I had difficulty walking due to cramping/spasms in my legs, and my manual dexterity was limited due to spasms/cramps in my arms, I woke up one morning lying on my left side with my head twisted almost 180º!! (fortunately I didn't start puking pea soup!)

I started drinking a small shot glass of tonic water that has quinine flavouring 4 times a day (have now reduced it to 2 times a day) and it's relieved the problem almost totally.

Not giving you medical advice, just saying this worked for me!

5vejil profile image
5vejil in reply to Saoirse2016

Wow! Thats incredible you found something that worked! I’m started to suspect it’s SPS (stiff person syndrome). It’s so rare though so I don’t know. Yours sounds almost like it too.

Saoirse2016 profile image
Saoirse2016 in reply to 5vejil

I couldn't believe it myself when it worked first glass I drank, I sat on the couch all evening without spasming all over the place and I got my first decent night's sleep in 3 years!

I've been having this issue since I was a teenager - used to have 'fainting' spells (only not fainting but that was the only word I knew to describe suddenly flopping on the ground and not being able to move for 20 mins), a GP thought I was anorexic...I was in and out of hospital a half dozen times being observed for anorexia, bulimia, diabetes; it wasn't any of them so I was given an EEG, and there was a blip on that, but they never found out what was causing it (this was in the 80s)

I've been years trying to get a GP to get me referred to a neurologist, and finally last year someone listened to me, and I had an appointment a couple of weeks ago. I've to get a CT and an MRI done now. So hopefully I'll get some answers now

5vejil profile image
5vejil in reply to Saoirse2016

Let me know if they find anything. I also will “pass out” but I can always hear. Sometimes I can even speak or see but can’t move anything else.

Saoirse2016 profile image
Saoirse2016 in reply to 5vejil

it's like sleep paralysis, but you're wide awake!

I didn't start having spasms until maybe 3 years ago after I'd found out I had low B12 levels. The twitching/jerking didn't start till about a year ago, so I'm not sure if it's all interconnected, that the low B12 might be exacerbating a nerve problem...

I'll see what results the CT and MRI bring!

Sleepybunny profile image
Sleepybunny

Hi,

If you're in UK, may be worth reading these documents

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

cks.nice.org.uk/anaemia-b12...

The fact that you are taking B12 supplements may affect results of blood tests that GPs can do to diagnose B12 deficiency.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

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