Has anyone experienced foot drop from b12 deficiency? Has anyone had spinal lesions also?

[Sausagedoglover1]

interested to know if anyone has experienced foot drop and had mri scan showing lesions? I’m currently under investigations and know of two on my spine and am still awaiting brain mri results .. I’m so worried I constantly feel sick 🤧

[Nackapan]

Yes .Fell up loads of steps before I knew what was going on then progressed to nasty falls.

My lesions were found on the brain MRI

Also 'flares ' T2

? Cerrabella damage

? Mylination.

3 neurologists had different opinions.

Main thing was deemed okay.

Had 2 a year apart.

I also had slot of nausea in the beginnings of treatment .

Not sure how far you are into treatment .

It's certainly a rocky road to recovery or maintenence of as best as you can get .

The list of possible symptoms is vast.

I went through many blood tests also eliminating anything else going on.

To date nothing else found.

Before not on sny medication.

If depends on how early deficiency is diagnosed .

Also on the right regime of b12 .

Hooe your symptoms ease soon.

[Sausagedoglover1 in reply to Nackapan]

Thank you for your reply , I’m on b12 injections every three months but feel I would need more frequently ❤️ hope you are doing well

[Nackapan in reply to Sausagedoglover1]

Yes sounds as though 2 monthly woukd help. If any neurological symptoms, which it sounds as though you have get at least 2 monthly as per NICE guidelines

[tomdickharry]

I had foot drop all my life - I'm 79 now. Now that I get regular injections, it's gone. So have the falls, the loss of balance, etc..

No lesions, though.

[Sausagedoglover1 in reply to tomdickharry]

Amazing, so happy your issue has resolved for you ❤️

[MrsTuft]

Yes I had foot drop and high contrast on my spine. It went with B12 injections. But yes it’s normal for them to assess you for MS. Try not to worry. You’re okay. You’ll be okay.

[Cherylclaire Forum Support]

Yes, I did experience foot-drop briefly. During lockdown, like a lot of people on furlough, I started a project: making a couple of raised vegetable beds. It was hot and sunny and I'd been working hard outside.

I'd cut my leg and hadn't realised - it didn't hurt. Later realised that I'd done it tripping over one of the half-finished raised bed frames: completely misjudged the height of it. Still later, as I was going in and out of the back door, I kept misjudging the height of the doorstep. Weird as I've lived here for 40 years.

After doing this a few times, I realised that my legs had gone numb which is why I hadn't felt the cut, and that the cause of tripping was that I was having to lift up my knee higher and higher to allow for my foot which was flopping downward.

I'd turned into Ronald MacDonald !

Also the cut on my leg took months to heal and looked a bit like a bullet-hole, like my mum's legs when she started getting ulcers.

Oddly, although this only happened on one occasion, it was in May 2020 and I'd been having very frequent B12 injections since my functional B12 deficiency diagnosis in 2016. An unexpected development.

In 2017, I had a brain scan, requested by a neurologist because of my memory and cognitive problems, sensory overload and concentration issues. To my surprise, I'm "normal":

"....There are scattered patches of white matter T2 high signal. The extent of this microangiopathic change is not excessive for age."

My spine was never checked. I have osteoporosis of the spine: vitamin D, Raloxifene and plenty of walking has reduced this to osteopenia !

[Sausagedoglover1 in reply to Cherylclaire]

May I ask how long your foot drop lasted? Mine happened after a holiday in the sun interestingly! But I had horrible burning on my torso at one side also and numb legs

[Cherylclaire Forum Support in reply to Sausagedoglover1]

Quite a while ago now, but don't think it lasted more than a day or two. Seemed to me to be due to overworking, physically and mentally. Maybe plus heat. A fast protest from body and brain at being pushed into overworking.

It has never happened since. Most of my B12 deficiency symptoms return every so often, just to let me know that I'm not cured and not always in control. Luckily this one didn't - but I'm thinking that I have adapted to life with limitation.

The numb legs (along outer shins) lasted far longer, and can return occasionally but in diluted form.

[KhandiBar]

Yes to foot drop but currently seeking diagnosis of PA. In the last few weeks the foot drop and poor balance have resulted in a broken ankle and knee. Subsequent to that I fell again and have broken my nose, hand and fractured my teeth.

[Cherylclaire Forum Support in reply to KhandiBar]

The causes of trips and falls are sometimes overlooked or not discussed/ investigated.

My mum would often have a fall and blame running for a bus and tripping, or running for a bus and slipping on some wet leaves. Truth is, she was having small heart attacks brought on by overexertion (the running-for-the-bus being the recurring situation). We realised this when she broke her jaw in a fall - but hadn't put her hands out as she fell. No marks on her palms.

A worry when things are missed in treating the immediate and the obvious.

Alongside B12 deficiency, I was found to have osteoporosis of the spine, osteopenia of the neck, for which I am prescribed daily Raloxifene and vitamin D.

When getting PA diagnosed, ensure that vitamin D, folate, ferritin and thyroid are checked too. These are the most commonly associated problems, but there can be others too - especially other autoimmune conditions if PA is found to be the cause. Psoriasis, vitiligo, autoimmune thyroid (Grave's, Hashimoto's) etc. Acknowledgement of a family history of PA and/or other autoimmune conditions can help get medical professionals closer to the diagnosis.

IFab (Intrinsic Factor antibody) test is normally used for PA diagnosis - but will only be positive in 40-60% of those with PA. May require further testing. Martyn Hooper (founder of the Pernicious Anaemia Society) got a positive result only on his third test. If/when a positive result is returned, then this is 95% accurate as a PA indicator - that's as good as science can get I'd think. SO NO RE-TESTING REQUIRED . Ensure that your GP is aware of all this - as clearly a single negative result cannot then be used to rule out PA as the cause of B12 deficiency. See NICE guidelines .

[Myoldcat]

Something I never associated with B12D, but for several years I've had 'spazzy leg' (sorry not very PC) where I kick the kerb instead of clearing it. But seems to have pretty much resolved now that I'm injecting every 3 days.

[Chickens44]

can I ask why would low B12 cause foot drop? I saw a podiatrist who gave me an insert for my shoes he said I had foot drop, but I didn’t associate it with low B12, I thought it was caused by nerve pain/damage in my iliopsoas muscle, which had caused an imbalance in my posture.

[Budsa]

I have foot drop, among other things. It makes walking quite difficult and tiring. I have also had an mri scan which showed spinal stenosis and nerve impactment. Although I have been taking 1mg/ day orally since I was diagnosed B12D 3-4 years ago, I recently decided to self inject 6 loading doses EOD and then weeklyfor the last few weeks. Prolonged B12D can lead to damage which weakens the myelin sheath which surrounds the nerves. I'm hoping that the injections will repair the damage and help protect the nerves from contact with bone. It's an outside chance and probably too late but worth a shot ( no pun intended).

[Cherylclaire Forum Support in reply to Budsa]

Yes - walking can get to be hard work.

Nerves can take a long long time to repair. For those with neurological symptoms, every other day (EOD) injections until no more improvements can be gained by that is what is recommended by medical guidance - although rarely seems to be followed at primary care level. I was given 2 injections a week for 6 months - the closest my GP could get from the nurses to an EOD regime.

I later found that EOD injections helped me more -and continued with this frequency for over two years before I ended up with an effective ongoing maintenance dose of two injections per week. It takes a while to discover a workable solution regarding maintaining any gains made, and not slowly deteriorating again, but we are all different and a solution that allows you to have maximum amount of control over any remaining/returning symptoms is the eventual aim.

Wishing you well.

[Sleepybunny]

Hi,

As far as I know I didn't have any spinal or brain lesions but I had many neurological symptoms.

I'm sorry to read that you are going through a stressful time.

Are you in UK?

Some links I post may have details that could be upsetting. You may want to have a supportive friend/family member read through them with you.

If you have brain/spinal lesions due to B12 deficiency in UK, I would expect you to be on treatment pattern for those with "neurological involvement". See Indications and Doses section in link below.

bnf.nice.org.uk/drugs/hydro...

NICE published a new B12 deficiency guideline in UK on March 6th 2024.

nice.org.uk/guidance/ng239

I have some reservations about it but there are some good bits.

Help and support on these UK websites

Pernicious Anaemia Society

Based in Wales, UK and has overseas members.

pernicious-anaemia-society....

B12info.com

b12info.com/

This thread about Patient Safety has info that might be useful to those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

I'm not medically trained.