Off balance

[Adb8]

Does anyone get off balance feeling when walking? Not dizzy or feeling faint. Its difficult to describe. Like an off balance feeling on the left side of my body. The faster I walk the better it gets. Dont know if it is my inner ear or the vit b12 deficiency causing it. If I stand and close my eyes I also fall forward. Its freaking me out…

[Higgs99]

Adb8 that has happened to me a few times . I am not sure what is the real cause but I can be walking along and suddenly I lose the balance and have stumbled but not fallen.. I am not sure what had caused it. Perhaps some other members will be able to explain

[Showgem]

I have this. For a long time it was all the time, as if I needed to find my sea legs and I was unable walk without support. Now it’s when I first get up or if I’m very tired. I also have loss of proprioception when it is dark or if I close my eyes meaning I lose balance and start to fall, this has improved but not completely. Both of these are signs of nerve damage caused by long standing b12 deficiency. It will improve with regular injections and the nerves may heal completely if the damage is not too long standing. How often are you having injections?

[Adb8 in reply to Showgem]

Thank you. I have weekly injections and a daily oral supplement. Now for 6 months. Just need to be patient perhaps😀

[Showgem in reply to Adb8]

Have you been diagnosed with PA? If you have PA oral b12 is unlikely to help. If self injecting try every other day to see if if improves. I still bump into everything so have constant bruising o my thighs so still have nerve damage a few years after starting injections.

[Nackapan in reply to Adb8]

Yes early days Keep up treatment.

Try vestibular pysio

[pitney]

Yes I walk sort of side ways at times in fact my late husband used to say I was walking like a crab as I used to bump into him if we were walking side by side , it also happens when I first get up in the morning😀

[calbous]

My first symptoms of B12 deficiency were not being able to walk straight continually.

[Jillymo]

Oh yes I remember it well.

I walked like a penguin from side to side I were so unsteady, at it's worst I crashed into walls and doors. It is a very unnerving feeling where your not even steady going down a kerb.

It seems to be linked to the B12 deficiency and does get better with regular injections. I have been selfinjecting for 2yrs and still feel off balance at times. I still get the eyes closed falling forward thing.

It takes a long time to repair nerves so maybe your injections need to be increased. I hope things improve for you soon. Xx 😘

[Shazy-B]

Yes I have this constantly, (when not taking folic acid) it’s usually worse of a morning for me. I have had folate deficiency for three consecutive years now, all times being detected around the same time of year Sept/Oct. I have been prescribed 5mg of Folic acid for 4 months each time but usually after taking it for around 3 months it makes me feel so ill and worse than at the beginning of taking it! I feel like I’m on a boat/drunk and I don’t even drink 😆 I’m due another blood test to see what’s happening at the moment as I feel quite off balance, anxious and my migraines increase dramatically too!

[Sleepybunny in reply to Shazy-B]

Hi,

Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.

BNF Folic Acid (UK document)

bnf.nice.org.uk/drug/folic-...

See Cautions section in above link.

I won't add any more as this is someone else's thread but I left other useful links on your forum thread.

[Shazy-B in reply to Sleepybunny]

Thank you 😊 but I’m always told my B12 is fine though?

[Sleepybunny in reply to Shazy-B]

I'm going to leave a reply to this on your forum thread from earlier this year.

[EllaNore]

Good morning adn8. It just so happens I was reading about this the other day. Because I'm dizzy all the time and I can't walk straight. Things affect me that I see out of the corner of my eye. Some days I don't even drive. But I was looking it up and there's a test called the romberg's test. They describe exactly what you're saying. It's a terrible way to feel. I feel that way too. I hope that we feel better soon because it's getting very aggravating. And the sleeplessness is really getting to me

This link explains it.

physio-pedia.com/Romberg_Te....

[topazrat]

I get it occasionally. I made the mistake of whirling my Granddaughter around in a circle the other day and ended up staggering around like I was drunk for a few minutes - I won't do that again in a hurry! Granddaughter thought it was great fun though 🤣

[Greyfeathers]

Hi Adb8. Years before I had ever heard of Pernicious Anaemia or knew anything about B12, I would fall over quite regularly. Be walking along the road and suddenly just stumble or fall. I used to joke I had "collapsible ankles" and just assumed I was clumsy. I also regularly walked into doorframes. Amazingly, though often bruised, I never seriously injured myself, even slipping downstairs several times. Won't bore you with my journey of discovery, but after an eventual diagnosis of PA and regular injections, I don't fall over so frequently. It does still happen, but often is a sign my injection is due. So.. yes, I think balance can definitely be affected by deficiency of B12. (But ear problems can cause feelings of dizziness, nausea and affect balance - Menieres disease is very unpleasant but tends to be much more acute and last a short time rather than an everyday chronic thing. At least it was for me).

[Adb8 in reply to Greyfeathers]

Thank you- this explains alot. I have days where I am ok balance wize. Then when I walk for about 2 hours like shopping then It would start and I would be tired. But it seems the closer i am to another shot the worse it feels.

[Nackapan in reply to Greyfeathers]

Ditto.I had falls.

One hitting my head hard on concrete

[Greyfeathers in reply to Nackapan]

You poor thing, that's awfuI. I did have one narrow escape, falling over in the middle of a very busy road, thinking I had plenty of time to cross. There was a funny side to that, though (given I wasn't squashed by a car) - I had just bought a big bag of wadding and fell right on top of it, so didn't even get a bruise!

[Nackapan in reply to Greyfeathers]

How great is that!!

[Polaris in reply to Nackapan]

I lost count over the years of the number of falls, ankle injuries - I walk fast. Walking on concrete stepping stones on holiday around 7 years ago, I tripped on a tuft of grass, and ended up with a black eye (realise only now my reflexes must have deteriorated ) Luckily, friend had brought her huge sun glasses but it must have looked a bit weird wearing them to a night out at the amazing outdoor Minack theatre, Cornwall.

Looking back now, a lot of symptoms have become clear, but onset was so gradual, subtle and varied - all worse in the dark.

Another odd symptom of proprioception - the feeling of still moving after the car had come to a stop ?

[Nackapan in reply to Polaris]

Yrs i also had do many symptoms I was told was the menopause.Basically told to get on with it .

I also had several falls.

One weird one 2ax over a style ice known all my life .

Missed the bottom step.

I knew something g was wrong.

Fell up the step into the kitchen flat on my face.

Put down to glasses!

Fell off the kerb mid sentence

Fell out of the car.

Worst fall was getting tangled in newspaper twice outside a garage.

Flat on my face on concrete.

Really thought I'd broken my jaw.

So many more symptoms.

Slowly since the menopause started.

3 years on last major fall / strange neurological event ending with vertigo.

Thought it s stroke as stuck.

I always walked fast too.

[Polaris in reply to Nackapan]

🤭 😳 Oh Nackapan - I shouldn’t laugh but couldn’t help it - the vision of you tangled twice in newspapers outside a garage……. Really glad nothing was broken though.

It reminded me of the time I’d been for a really long walk on the salt marsh - stopped off at Tesco’s and fell flat on my face in the front entrance - got up feeling shaken but tried to walkthrough as though nothing happened.

Tesco’s always seemed the place of my worst humiliations - Thankful now weekly shop is delivered - the drivers are really helpful and friendly.

Your step incident brought back something I’d forgotten - my sister always v. balanced mentally and physically, had a really bad fall down steps outside her back door - very shaken up but, luckily, nothing broken.

I had a strange incident after stress - began babbling nonsense on telephone to my daughter, who dialled my nearer brother, - later diagnosed with a t.i.a, - I don’t remember anything about it until coming to in hospital, by which time son and daughter (both several hours away) had arrived. GP later tried to put it down to thyroid - I know it wasn’t !

Worried at the moment about dear friends both on Metformin - one just diagnosed with anaemia and the other, recovering from a stroke.

Take care 💃🏽

[LadyBothwell]

I have this feeling periodically, it comes and goes and it's horrible. Also have terrible vertigo and have been physically sick. I have to avoid any thing where I raise my head quickly, I do yoga and that can also make me feel sick and if I close my eyes standing. I have PA and Iron deficiency. Ive found that it seems to be less when I'm fully topped up with B12 and iron and folic acid, it gets worse when one of those things is out of balance. I'm not sure if it is relevant to you but I also found it got crazy worse with hormonal peri-menopausal symptoms and I staggered about and bumped into things continually and then along came a ringing in my ears that drove me crazy but which now only comes back when I need an injection! I remember at the time the GP checked my blood pressure for a week as low or high BP can also cause these dizzy feelings. Might be worth checking that too.

[RoMello in reply to LadyBothwell]

Oh the dizzy thing and falling over...

I SO sympathise with you!

I would put it down to long term neurological damage in my own case. I've been officially b12 deficient for 20 years but getting injections only 8 weekly. I'd feel better for a week or so then go downhill massively until I was on my knees and got the next injection.

My balance is now dreadfully unpredictable. I really started to notice about ten years ago in my early 50s it had got much worse, when I started needing reading glasses for close focus and am fairly short sighted but wore contact lenses.

I found picking runner beans had me falling into them, off paths/steps etc. It was a lack of visual reference in my surroundings. I even had to throw myself onto the grass and fling a knife away from me while trying to cut beetroot! (Must have looked mad to any neighbours?!) I got regular bouts of vertigo and nausea. This was before I started SI. The vertigo and nausea have not returned severely since beginning SI about 6 years ago.

It improved considerably also with varifocal glasses, but I can't keep my balance on two feet in the dark or with my eyes shut. And more random dizziness, the 'penguin walk' and ringing ears are a reliable early warning sign that I have forgotten to do my next b12 SI or need to top up more often.

I inject every 1-3 days ish. If I have lapsed a few days because I'm foggy and forgetful I get the most horrible symptoms on getting out of bed of my eyes jumping rapidly from side to side and a total inability to fix my eyes on anything especially middle and far distance. I have hurt myself badly falling over at these times, broken specs,hit my face against door frames, cupboards etc. It does go in a few days if I up my injection frequency.

I was furious that the GP practice nurse gleefully announced that this was evidence of a psychosomatic symptom and that I only felt better after the 8 weekly injection because most people had a placebo response to injections and didn't really need them! That was when I started looking at SI very seriously!

Sorry had a massive rant, but I know plenty here will understand.

I'd say consider SI sooner rather than later, so you don't sustain longer term problems.

Good luck!

[Nackapan]

Yes.I know exactly what you mean.

I had Mt ears checked.

Ear pressure checked.

Lights make me worse .

I've gradually improved.

Can return enough not to be able to leave the house if need a b12 injection or just bad for some reason ?

Vestibular physiotherapy is helping me.

A vestibular disturbance causes it.

No quick fix.

I was told that by a neurologist.

Some find it transient and with enough b12 get rid if it.

This had been a persistent symptom for me.

I now walk in a straight line.

Stop myself stooping forward.

Takrx extra energy to stay upright

[Narwhal10]

Hi Adb8,

I am sorry to read and yes, unfortunately it is a symptom. I have had it too and yes, it is really quite confusing.

Vitamin B12 treatment is so important as is a multivitamin. Vitamin B1 has also been linked to ‘orthostatic intolerance’. Medical jargon for strange feeling stood up or moving in an upright position.

[Litatamon]

Proprioception is one of the most common symptoms of b12 deficiency. One of my friends used to regularly ask me, Why can't you walk without bumping into me? Why can't you walk in a straight line on the sidewalk? My sister-in-law used to call me clumsy.

I honestly did not think anything about besides answering, I don't know!

And then the foot drops and falls started & I realized something was not right.

My walking has not come back, the natural gait. I walk but I used to walk for hours and hours. And I find I still need to say left, right, left, right and think through the awkwardness of my body - like something is not connecting properly. If it wasn't for my biking, this change would have taken me under. Walking was my joy. So I am grateful that the biking is not affected. (Although thinking back I did have foot drops on the bike as well, thankfully they do not occur anymore.)

[Hidden]

For me, severe wonky walking and even tingly extremities has been caused by Gluten Ataxia (Damage to the cerebellum - the part of the brain that controls coordination) Now I’m not saying the OP has the same condition, or anyone else who has replied for that matter, but to assign every possible medical condition to B12 deficiency is a little reckless. I would certainly recommend a Gp visit and maybe neurology referral to get things checked out. I have many deficiencies caused by long term celiac disease, thankfully now under control with SI and supplements but I am getting a little tired of reading posts on this forum advocating that B12 is the answer to everything.

[Nackapan in reply to Hidden]

Thus forum is about b12 deficiency./ PA So we can only give out opinions of that.

B12 is certainly not the answer to everything.

I think we all realise that fact.

Of course every other avenue exhausted.

And often is as medics fail to comprehend how PA / b12 deficiency csn have overwhelming symptoms.

But when deficiency is found and often under treated B12 does remedy alot.

Also often takes a longer tine than hoped / expected.

The neurologist I saw recognised damage to the cerebellum in my case.

He made the connection with severe b12 deficiency.

He had b12 deficiency himself so took a 'special interest '

[Litatamon in reply to Hidden]

"But to assign every possible medical condition to B12 deficiency is a little reckless. "

Well who is being dramatic with his (or her) words?

No one is discussing every medical condition And no one is being reckless.. The OP has a specific symptom that is one of the earliest and most documented symptom of b12 deficiency - proprioception . And we are discussing it. On a b12 forum.

Everyone on here is aware that there are other possibilities for symptoms.

But we are also a group of people who had a myriad of symptoms, that alleviated with b12 injections - sometimes almost instantly. Yet some have spent years getting misdiagnosed with these symptoms, when they were indeed b12 deficiency - because they disappeared or dramatically improved with treatment and are documented. Heck my GP thinks b12 deficiency is all about fatigue and energy only. I had over thirty symptoms, and more than 80% went almost instantly - after years of severity. And she still thinks b12 deficiency is mainly about fatigue only. She has missed a learning opportunity.

I do appreciate you sharing why you have acquired wonky walking. I am always happy to hear about other possibilities.

But the patronizing tone, not so much.