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.
Massive spasms? Almost Seizure but aw... - Pernicious Anaemi...
Massive spasms? Almost Seizure but awake. Could it be B-12?
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.
Thanks. I do have other symptoms. Anger swings, dry skin, mouth sores, can’t sleep, vertigo, dizzy, constant fatigue.
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.
No. Those seizures are nothing like any recognised symptoms of a B12 deficiency that I've ever heard of.
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.
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
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
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
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)
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.
Thank you so much for all the info.
Unsure about PA, however there have been many cases of people controlling seizures with a ketogenic/carnivore diet
I may have to do that. Thank you
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
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).
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.
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?)
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!
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.
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
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.
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!
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
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.
Oh deary me. I so want to give up. Could admin staff read and help? P,ease?
Blood Pressure Rises When I Receive B-12 Shot
Could it be B9?!
