Hi,
Have just been diagnosed with severe spinal stenosis. I have reasons to believe it has a congenital aspect with me so that would eliminate b12 deficiency.
But in reading I found some correlation studies with b12 deficiency.
I thought that b12 deficiency only caused issues with degeneration of the spinal cord. I was surprised to see the study.
Any insight?
I have spinal stenosis and was diagnosed in 2021 after severe Neuro symptoms. After not much help from the professionals, I looked into the fact my my b12 injections had been cut from 8 weeks to 6 months a year befor the 2020 covid lockdowns, and I went 18 months with nothing due to the docs not doing injections due to covud. They eventually gave me tablets. But i looked up that with tablets the blood test may be high but the active b12 that they don't test may be low. I pushed my gp and got back in injections (every 10 wks) but started self injecting every other day the same time. I do feel the injections have helped the numbness and all the Neuro things lighten. The spine team eventually moaned that despite the vertebrae being very damaged in my neck he doesn't believe it would cause the numbness, balance, limo, problems. The Neuro he Sent me to dismissed the lot and also doesn't believe in b12 deficiency (told me only recreatiinal drug users would have low active b12 "and you're not one, are you". What a b**ch!) but although I do believe the stenosis must surely be part of my problem, I know the b12 has improved it a lot. I had been in b12 injections every 8 weeks for well over 10 years, maybe 15, then a go decided to make me go 6 months without to "see if I needed ut", which ran into lockdown. The years without an injection caused ut. I believe that.My neck though, spinal stenosis is upsetting. No one seems to care my neck has gone spurs poking they the protective lining around the cord, and I shouldn't lift heartstrings or jump or fall, yet my family have me being the main one moving house. And my numbness is worse in this time, despite injections.
So very sorry to hear valley. I hope you see some relief and answers in a timely manner. And thank you for sharing it.
Don't you love their crazy statements? Doctors. Insert sigh. I swear b12 deficiency is an absolute public health scandal.
Thank you. Just seen that my post is full of autocorrect mistakes where words have changed into completely different ones! Hope you got the jist!
I'm sorry you havd had this diagnosis.
I haven't any answers apart from observations of my daughter.
She was tested for cauda equine syndrome . Amongst alot of other things
Lots of back Mri,s. 8 years ago now.
A herniation saw I her lower back at one stage.
Some urinary incontinence.
Legs just giving way through her life.
She's only 32 now.
Ths is not from ageing .
I believe late diagnosis from severe b12 deficiency, megabolistic anaemia caused damage .
As well as genetically being predisposed .
Her main reason for needing a wheelchair is POTS . She can walk more now but cannot stand on the spot or bed over . ( drug needed )
Fortunately her incontinence short lived and her back seems to have recovered going by last spinal mri.
I think there is a connection with B12 deficiency that is not understood yet hence the studies.
I do hope your symptoms can be helped
Always so frustrating to hear what your daughter has gone through Nackapan. Thank you for your insights.
And all the best to her for improvements.
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I have mixed emotions. It is hard to hear but such a crazy relief for it to be found. Every reading highlights exactly what I have been saying to doctors. The shopping cart relief. The sitting relief (sitting makes most back pain worse). How can I not walk but can bike? (Cycling takes the pressure off the spacing). I said over and over and over I have no muscle atrophy, so strength is there so why am I too weak to stand or walk much? Blah, blah, blah.....but no one could figure it out.
Once again I did in a roundabout way.
***Everyone should acquire and check their old reports.*** I have been scanned for gynecological reasons for a decade. And one lovely radiologist did above his/her job & noted spine damage when they only had to note gynecological issues.
And I kept it in my head from years ago, and shared it with this new GP and voila a spine MRI.
At least you know what you are now dealing with.It's very common and is in varying degrees .
Don't despair.
Another condition to accommodate.
The right pysio
The right movement .
The right chair
Never had so much time think about how / what to do move I imagine !!
I'm similar having to think about how I move,......exhausting but it's the vestibular disorder I'm left with.
Was very near to trying my bike again.
Ridden a bike since 3 .
Always part of my life growing up without a car .
Then ....my back sore . Lower back.
So you saying cycling good .
Impossible for me again ....yawn.
Always something despite getting on with life better now.
Hope you find ways to cope.
Nackapan, yes for spinal stenosis cycling is good, as the leaning forward takes the pressure off. That is why a shopping cart weirdly helps and going up steps is actually easier than walking.
Maybe try a bike with different sitting position.
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Yes it is a relief to know. Mixed emotions.
Yes working up to using my bike again.
Have tried a few times now
Not strength. Have that .
Well enough !
It's the vestibular disorder I'm left with.
Weirdly gives me head pain.
Tightening of head.
Pysio thinks effort of keeping balance??
Makes sense taking the pressure off lower back.
One bonus for a shopping trolley !
Manual handling courses ( mandatory old work) used to have a hay day on shopping trolleys .
Depth ect
Hi,
I hope you are getting the support you need from your doctors.
I found some interesting articles when I searched for "spinal stenosis b12 deficiency".
Link about Spinal Stenosis
Aimed at doctors
patient.info/doctor/spinal-...
I have not had support, as no one has found the reason for my problems walking. I kept saying zero atrophy makes no sense why I can not stand long or walk more than ten steps without regrouping or sitting. For years and I only just got this MRI.
And I only know that is severe spinal stenosis because I read the MRI reports. My GP, who is new to me, called for me to come in on Tuesday. He will not know that I already know why - should be interesting.
That link is incredible sleepbunny - thank you.
Just wondered if you were also assessed for SACD, sub acute combined degeneration of the spinal cord. I think some symptoms of SACD can overlap with those of spinal stenosis.
PAS article about SACD
pernicious-anaemia-society....
I have not yet seen the doctor, will tomorrow.
I am just playing doctor and reading my own MRI results ahead of time - love our system with sometimes being able to get these results early (Canada). There were other troubling issues in other parts of the spine, but not as serious (it seemed to be reading) as where the severe spinal stenosis and other little goodies are located.
For example they talked about the spinal canal being capacious in those areas where in the one bad area it was listed as near obliteration of the epidural canal.
The not noted SACD was exactly why I started the post. As I thought that was the only area affected by b12 deficiency (and maybe it is - 🤔)
So sorry to hear you are struggling with spinal stenosis. I am particularly interested to hear comments about B12 and spinal stenosis. I started with spinal stenosis four years ago and the pain was dreadful and all-consuming for month after month. My GP was useless and ignored me.
I only managed to get my PA diagnosis just under a year ago so had never connected the two conditions. I have to confess my only relief from the spinal stenosis pain was decompression surgery some 18 months after it started and after I believed I had a problem with my hip not my back. I hope you manage to get the help you need and in a timely manner. Best wishes.
Sorry to hear yorkshiregirl & thank you for sharing with me (and us). I really appreciate it.
I see the GP tomorrow and I will be asking for a referral to a neurosurgeon. I refuse to live like this.
I am also sorry to hear about your GP. Just craziness.
My endocrinologist just before Christmas decided to tell me - without me asking his opinion & him not knowing much of the background of my legs, that he thought my legs were a mental health issue.
I took care of him in the moment.by asking him where he was getting his 'diagnosis' from & what does that even mean. His response, Just my opinion and I am a doctor and I am allowed to have one. I then said well here is mine - I find it offensive that I am suffering with a physical issue that has not been figured out for years & is adversely affecting my life and without any investigation you've decided it is in my head.
He still would not give me any insight into his 'doctorly findings'.
This was pre-getting my MRI & therefore results.
He is lucky he is not seeing me until May as if I saw him any sooner not so sure I would not punch him the face..🤣With the report itself.
There is so much that they would never say to a man. Of course men can have crappy care, but doctors would not be so free with these kind of statements. Well in my opinion.
I'm really sorry you're dealing with this. I'm not sure this helps but I had a two level ACDF surgery three years ago for severe stenosis in my cervical spine (I'm 56) and have PA. I hope you get some help soon.
Hi Litatamon
I have recently had neurosurgery for severe spinal stenosis. I evaded surgery for years until my ability to drive was being compromised. I’m not sure if the cause but just wanted to let you know that the surgery, although scary, was well worth it. I’ve had so many surgeries in the last five years I was loathe to have any more. The whole of the left hand side of my body is now held together with titanium. I’m glad it’s not magnetic.
Thank you so much for sharing Twaddletop.
My new GP is a former physiotherapist so not sure if he will fight me for wanting a neurosurgeon referral right away, but it is what I want. And it will take probably at least half a year to even get an initial appointment, I am thinking.
I have had many instances where I have sternly avoided pressure to have surgery. But on this situation I do want to consider it in a timely fashion. I am optimistic about it all. So thank you so much for sharing your experience, it helps.
Hey Litatamon
I got to see a neurosurgeon pretty swiftly but the surgery that he advised should be done within six to eight weeks?? I waited two years getting worse all the time. I am however very grateful to the NHS because once in the neurosurgery unit, the care was exemplary.
Wonderful to hear. Happy that you didn't deal with anything less than exemplary when you finally got care.
Thank you for sharing all that - it is helpful and gives me a lot of comfort. I really appreciate it.
I am in Canada & our wait times can be something, but hoping.
Just back and my GP did not skip a beat and immediately said I truly think it is best to go straight to surgery.
He didn't know it but I was overjoyed to hear it. I have fought surgery both gynaecologically & thyroid based. But I was clear as a bell on this, right away. And coming from a physiotherapist (my GP) it helps more. He doesn't think physiotherapy will do a thing for it where it is at in severity. Yes physio pre (to prep my body) and post but not as a full recovery choice.
B12, he listened but they just don't get it. I told him my lesions on the brain MRI are probably due to prolonged b12 deficiency. And said about how b12 can impact this or that. And that is why MS can be misdiagnosed. He just listened (which I do appreciate) and told me that the lesions are most likely from the severity of the spinal stenosis (I didn't know that affected the brain like that). And he said your b12 level is good now (We all know that speech. 😁). So I left it there besides giving another 'high b12 because of the injections' response.
We can not spend every moment on them & on them & on them. It is exhausting. I thought a lot about Dr. Chandy during these brain, spinal cord & b12 discussions today. There is one of his videos where a woman was in a wheelchair due to her MS diagnosis. And he had her walking when he discovered it was b12 deficiency, not MS. Hero. I hope we make some in roads with our continual outreach to these professionals.
Thanks for letting me ramble on. I am filled with emotion that this issue has been sitting in a gynaecological MRI report for years & years (long story but not my gynaecologist's fault but certainly my former GP's)..
A loss of so many years. Sigh.
But part of me is so happy and relieved a source has probably been found.
Thanks for listening.
I’m so glad your doc deemed surgery necessary Litatamon. I have had so many surgeries in the past few years, it was me that resisted. I am in Scotland and know our health systems have nothing in common, but I pray you don’t have to wait too long for the relief the surgery brings. I too have lesions on my brain but B12 was never mooted as a possible cause. x
Thanks Twaddletop. Beyond appreciative. All the best to you.
There may be deficiencies from other nutrients as well. Check for fatty liver which may be causing malabsorption or low bile levels which are common with malabsorption. You cannot digest food without normal bile levels. Ox bile salts have been recommended for decades until pharma took over and you don't hear that anymore. If your gallbladder was removed, you have low bile levels. I use Edge Electrolytes from Australia which I recommend to the group I moderate for ALS patients. Recent studies indicate that it's not only calcium deficiencies, but mineral deficiencies are equally as important. Find a liquid product with all 92 minerals as tablets and gel caps may not break down with malabsorption or low bile levels.
Keegan,Such great information, thank you.
I do not have a lot of room in my budget as thyroid hormone cost - due to a thyroidectomy - are really constricting things financially.
But I will definitely be saving your suggestions and immediately thinking about ordering something from Trace Minerals.
The ox bile I am a little concerned because I have one kidney, so I really have to watch and research with each addition.
Thanks again.
Hi Litatamon. I had occassional spinal related problems for around 10 years prior to discovering that I was also B12D in a routine test. I was suffering from several neurological conditions. All I got from my doctor was a months supply of 30mcg tablets and told to ask my pharmacist to recomment a good multivitamin. This was despite me gaving a diet that included lots of meat, cheese and eggs. He did tests to eliminate coeliac disease and h.pylori and also ordered GPC and IF anti-body test, all of which were negative. A year ago my legs became much weaker. I found I had to work really hard at concentrating on putting one leg forward after the other and slowed right down, tired, in less than a mile. I had previously been doing regular 10k walks and found that this helped with my lower back stiffness. I also started feeling both both intense pins and needles and loss of sensitivity to heat down my right leg and numbness in my right buttock and rhs of abdomen. My left leg starts twitching every 15 seconds or so when I sit or lay down to relax. Fortunately, I am not suffering any pain. Around the same time, I started getting burning pains across my back to my left arm. My doctor ordered an MRI and this showed all sorts of problems in my cervical and lumbar spine. Spinal stenosis, cord compression, root compression, myelopathy and spinal degeneration were mentioned throughout the report. I then waited 9 months, through 6 cancellations, for my spinal consultation.
What a disappointment. The spinal surgeon clearly had not read the detailed radiologists report and was only interested in the pictures of the lumbar spine - she was a lumbar spine surgeon. She couldn't offer any explanation for any of my obvious neurological symptoms, would need to ask a colleague about my cervical problems, had no idea how b12D might have been involved. The outcome is that I have to read up on and decide whether I would like to proceed with lumbar decompression and insertion of some metalwork whilst awaiting a 2nd appointment and a possible thoracic MRI. As things stand, I can see very little difference in outcomes between physio and surgery.
I have upped my oral b12 from 1mg/ day to 2mg/ day (considering si) and have started a course of physio to try and restore the lordosis (natural bend) in my neck. I believe that this may be the root cause (pun intended) of my problems. The incorrect bend in the lumbar region is probably due to compensation effect.
Can you provide a link to the study you referred to in your original post.
Budsa, so frustrated for you. I have spent over an hour trying to find the study.
I regularly link back these studies to my phone. Rawr.
I will keep looking. It was a very small study that stated that around 59% of the participants with spinal stenosis had b12 deficiency. But a small number of participants makes the conclusions a bit suspect.
So many of your symptoms made me go "wow". I have told so many professionals I have to say right -left-right-left just to walk (I know how exhausting that cognitive part can be - so sorry Budsa). And that I am not coming from a sedentary life so this is all bizarre. And no muscle atrophy. How can one have no muscle atrophy but no strength? I would ask that over and over. I can not believe it has taken this long.
I had sepsis twice in this period (which also can be traced back to low immunity from b12 deficiency), so I thought I just didn't get my legs back.
This has nothing to do with b12 deficiency, but I found this video incredible. And it is nothing to do with the title, it is because he has empathy for the impact on people physically and mentally -
Another reminder to everyone -
Get or for ease even buy your medical reports/results (I bought, low cost, all my gynaecological scans ahead of appointments - this hospital sent it immediately for free. And here, Ontario, we can get all blood results online before appointments)
If that radiologist had not noted a back issue all those years ago, when his or her job was to look at cysts, fibroids and abscesses, I might not have got my spinal MRI with ease. No one ever told me it was noted. And was only on one of many scans. Thank God I kept it in my head all these years.
There have been quite a few times where I have a scan before an appointment and doctors do not share the full story.
A clinical picture of a B12 deficiency and PA explained.........
B12 deficiency with High Serum B12?
B12 Deficiency
BMJ Best Practice website advice on B12 deficiency
B12 deficiency
