Maybe not the happiest topic, but I'm keen to understand others' experiences of possible spinal issues/damage from PA/B12d.
What was your experience of spinal issues? Did you recover partially or fully, or are you still trying to?
I believe I have demyelination of the spinal cord due to B12d. Unfortunately I didn't get diagnosed because I regrettably began self-treating. But at the time I had very intense buzzing/pins and needles/electric feeling coming from my body that I didn't really understand at the time but came to realise was the base of my spine. I think I just hoped for a while that it wasn't.
There were also associated neurological problems like peripheral neuropathy.
I didn't get proper loading doses and made a pigs ear of early self-treatment. I've since had around 12 shots privately and am now SI hydroxo every day for the past 2 weeks.
Is there hope that, with continued daily SI, I could see off the buzzing in my bum !?
I think there has been a fair bit of improvement, but sadly also some additional damage along the way. I think all I can do is keep going with SI and keep hopeful of small improvements.
Your shared experiences would be very helpful and most welcome.
Thank you!
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Full bloods were normal but likely because I'd (stupidly) supplemented before. I panicked about delays as it wasn't clear if I'd get help. Big mistake of mine.
I did see a neurologist who did the Babinski, Romberg etc which were fine and normal. He thought alot was down to anxiety as many do I suppose. So no MRI yet but I may go private.
Well you are doing the right thing with daily injections and it’s great to know that you cannot overdose on B12 , I have no experience of Spinal cord symptoms , but I have read that Subacute Combined Degeneration of the Spine can occur in untreated Pernicious Anaemia. Just persevere with the injections and take a modest folic acid daily ( 400mcg) . Hope you can get some advice from someone who has experience of this , Best wishes .
The Subacute is a big fear, but I don't know if I match the description I see on the PAS website.
All I know is the base of the spine gets a little numb and there are peculiar nerves rattling in there. Perhaps this isn't so common for most people?
You have to have mri scan, this will show the level of damage if any has occurred.I had to go private as doctors felt I had a vivid imagination in explaining my symptoms. I had numbness all across lower lumber spine, ligamentum flavum hypertrophy down the spine and stenosis. I fell over many times slipping lower lumber disc, and incontinence.
I had nerve studies that showed my brain was not receiving messages from my feet. Slight damage to eyes arms ok.
Eventually getting b12 injections I recovered enough to be able to have operation privately, I had no faith in the NHS or doctors.
Yes it took a few years to recover so continue with your treatment and if you are concerned you will have to get a mri scan.
Perhaps we'll go privately too as most of the doctors and people around me think I have anxiety/mental health problems. Maybe I do! But like you, this is not in my imagination - it's in my body.
Great to hear you recovered enough to be operated on and perhaps healed up quite well? At least before the operation?
I'll keep injecting every day but if I'm not sure about progress by August then I think I will get a private MRI
I think we need to be careful not to put everything down to our B12 deficiency. I'd strongly support the suggestion to visit your GP to get a referral for an MRI. Your self diagnosis may be correct, however it's worth ensuring that your spinal cord is not impacted, possibly by a prolapsed disc.
It's a peculiar experience that took me a while to recognise. It wasn't painful to start but was like a rattling - I know it sounds weird but it's the only way to describe it. I also felt my legs were a little weak for a while and there were shooting pains/electrical nerve feelings going down my legs, which is when I contacted the Dr. Soon after it felt like I couldn't feel my legs, which is when I panicked and started supplementing. Big mistake.
Perhaps there could be a disc issue in there too so yes MRI makes sense. The pins and needles I'd had for a year before and misdiagnosed 'stress' made me think that it was B12d/folate. Especially as I had a low meat diet for many years.
I would give up everything to go back in time, not supplement and hold out for a proper diagnosis!
My brother had these problems. His B12 was just under range. He was ignored until given a Multiple sclerosis diagnosis and only given pain killers for nerve pain. Things have not gone well. He is so disabled he is in a wheelchair now.Before this I was giving him b12 jabs 3 times a week but he held off saying it wasn't helping him, then he seemed to get a paranoia and went a bit mad, he is out of the system now, won't see anyone.
I am still convinced it's Pernicious Anemia that progressed to Subacute Combined Degeneration of Spinal Cord but his mind has gone now and I can't help him and unfortunately he has gone very nasty.
Sally Pacholok - Could it be B12 book is excellent.
You must insist you get an MRI and all the diagnosis you possibly can before more damage occurs . You should still be able to get this even though you are self injecting. Some people do better with Methylcobalamin injections.
Very sorry to hear about your brother. That must be a very tough situation.
Daily injections are improving things step by step. But I am locked out of the system now because I anxiously panicked and went to AnE to try to get the treatment my GP denied me. I was waking up with tremors and allsorts of scary symptoms. It was the same hospital as the neurologist and they didn't like that I did that so cancelled my neurologist referral. But I did get CT and bloods which were all fine just no MRI.
I went private instead but he didn't think I should pay for an MRI.
The GP did offer to retest if I came off supplements for a week, but after 3 days I was getting much worse and didn't think it would work anyway so started injections.
Its been a very unlucky situation that I have made a complete mess off.
If I do a private MRI will the GP take notice?
I think they're ignoring me now and I feel quite stuck.
I think you should insist that you are completely clear on what is going on. Only comprehensive tests/scans etc. The GP needs to arrange either an appointment with the specialist or refer you to have a mri scan. Can you face this. Do you need to say you will write and complain about your treatment? This is too important to ignore.
Do you belong to a Pernicious Anaemia Society at all. Martin Hooper takes up cases sometimes but gives great advice too.
My brother has a good brain and he could walk before all this. Now he’s in a bad way. Persistence is all i can recommend.
Point 1 in above link is about under treatment of B12 deficiency with neurological symptoms.
Link has letter templates people can base own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
I've written some very detailed replies in the threads below which may have B12 info you might find useful eg causes of B12 deficiency, books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
I don't have the cold water feeling but the others ring true for me. While most of them are subsiding with self treatment I think there may be further issues so I will push to see my GP asap
There is a helpline number that PAS members can ring.
If there is any chance that you may need to make a formal complaint in future then it might be worth getting copies of and access to all blood test results and other relevant medical records.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I recommend you track down the local guidelines for your CCG/Health Board and compare them with BSH, BNF and NICE CKS links.
It's good to know what you are up against locally.
Some UK local guidelines have been posted on this forum. Try searching forum posts for "Local Guidelines" or try an internet search or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy of guidelines on B12 deficiency for your area.
To find out what degree of nerve damage you have you need referral to a neurologist for nerve conduction tests, EMG to check muscle function and a MRI of your brain and spinal cord. The MRI will help decide if your symptoms are caused by central nervous system problems such as MS and would show signs of B12 damage to the spinal cord. The nerve conduction tests will tell you if your large diameter motor /sensory nerves are damaged. If these tests are all normal then by process of elimination you most likely have damage to your small fibre nerves. This is the best of the three options although still very unpleasant. Small fibre neuropathy has many causes of which B12 deficiency is only one. You should ask your Gp for blood tests to check for diabetes, thyroid problems, consider an autoimmune screen. Get your vit d and ferritin levels checked. Often the cause of small fibre neuropathy can’t be found. It’s possible to have a skin biopsy to test for small fibre nerve damage but this isn’t very reliable. I hope all goes well.
The sad truth is that I did get a referral to a neurologist but after my normal blood reading the symptoms progressed considerably. I tried to contact my GP who ignored my econsults and I couldn't get through to the practice on the phone as it's pretty much blocked all day.
Instead, after horrendous full body tremors in the night, I went to my local AnE with my neurology referral letter saying it was urgent. They did a CT scan and bloods which were fine, but then neurology wrote to me saying it wasn't appropriate for me to be seen and rejected my referral. I probably cost them money.
I went to a private neurologist who did basic Romberg, Babinski etc but thought I had anxiety problems.
So I think my only hope is one last chat with my GP to explain where I'm at and see if he could refer me again with a new case or something.
I've been basically hoping that everyday SI will sort me out as all the doors have closed to me
If you can afford it, go private and get this investigated urgently.
I have the same condition, and I see the Neurologist in 7 days time after having B12 going undetected for 18 months, once diagnosed and going back to my GP with Spinal related issues - the GP said I was Mentally ill !! In their professional opinion - if it's not "Functional", you are "Mental".
It took me one year to change my GP - my new GP as soon as he seen me, made the appointment for the Neurlogist. I am struggling to walk now.
I understand that almost all B12 issues in >60 year olds are a result of Pernicious Anaemia.
PA/B12 can cause Subacute Combined Degeneration of the Spinal Cord.
I have pain in my Spine from neck to tail. I have not been tested yet, but all the symptoms I have seem aligned to SCD.
This is what I will discuss with the Neurologist (gently).
Sorry to hear about your condition. I hope you get some relief.
Horrendous that your GP said that. I think it's a common reaction when we're open and honest about the issues we face. I have been told I have mental health issues on several occasions now which has pushed me deeper into self treatment.
I did try a private neurologist who thought I had anxiety problems but still tested motor nerves with Babinski, Romberg tests. I'm not sure I chose the best one for the job and left with only the knowledge that I probably didn't have MS. I hope he tests you fully.
I am in my early forties. I've had a low meat intake for a while so I suspected it was dietary, but I'm undiagnosed.
Along with nerve problems, I also now have creaking/cracking joints like early arthritis. I also have some soreness along the top of my spine.
I hope you get some relief. In the meantime I aim to discuss one final time with my GP and then potentially get a neurology/MRI scan appointment booked.
I have some similar symptoms of shooting pains in legs etc, though not sounding as bad as yours & not around spinal area, and I have had a nasty nerve-type head pain and bad nerve pain in right shoulder/arm/tingly numb fingers ongoing since c. end Feb. I have been really debilitated, not anle to work, have had LOTS of appts, calls, blood test, 111 calls etc.
I have been trying to go along with GP initially but have ramped up mentioning my under-treated B12D. They have disagreed any of it can be that, but she has written to haematologist in mid-June - still waiting to hear.
Pushed her some more & in late June she finally ordered nerve conduction studies - but just on my wrist for carpal tunnel, my (private) physio has said it isn't that. (Got appt through for Aug).
Also pushed some more & got her to do neurology referral - hooray, I thought.......But, I just got letter & booked it -
I saw at least 5 neurologists and only one of them thought B12 deficiency was a possibility although I had typical symptoms, a previous low result and I asked all of them if it was a possibility.
My feeling is that there are too many GPs and specialist doctors whose knowledge of B12 deficiency is inadequate.
If you can in some way get to see another neurologist, ask them to check your proprioception sense. This is awareness of your body in space, sometimes called position sense.
Issues with proprioception are associated with B12 deficiency and less commonly also with folate deficiency.
Balance issues when it is dark, your eyes are closed or your view of your surroundings is blocked can be associated with proprioception.
For example, I used to misjudge position when I reached for things which meant broken crockery.
When I went out at night, I found it harder to walk in a straight line.
I used to fall off the kerb when walking along pavements if someone walked directly towards me and blocked my view of the surroundings/what was ahead of me.
Two tests that can help diagnose proprioception are
1) Romberg test
2) Walking heel to toe with eyes closed
These tests should only be carried out by doctors at medical premises due to the risk of causing loss of balance.
I stupidly tried second one at home and almost walked into a wall.
Videos of these tests and other proprioception tests on Youtube.
Thank you SleepyBunny for your kind attention to this.
I got hold of my GP this morning who agreed to an MRI in the next 2 weeks. But because I failed to get diagnosed with B12d or PA (because of my fatal pre-test supplementing), they will always have a question of whether I have somatic symptoms.
I think this is where doctors struggle with B12, probably because nerve conditions overlap with anxiety.
If the MRI reveals anything I should get a neurology visit. But if it's clear then it will probably end there. And anything further could be considered somatic disorder. But I know there is nerve damage. I'm still living with a buzzing feeling. And I suppose all I can do is hope it will clear with supplementation...
I did get to do the Romberg test previously. And Ive just tried proprioception test and that didn't go well! Maybe I'm tired!
"anything further could be considered somatic disorder"
I was diagnosed with hypochondria, psychosomatic symptoms etc etc despite having typical B12 deficiency symptoms...strange how the majority of my symptoms improved or disappeared when I finally started B12 treatment.
When all possibility of treatment from NHS ended I resorted to self treatment...I never wanted to but knew that I was headed for dementia and spinal damage if I didn't. I already had dementia type symptoms and pins and needles in the spine. It shouldn't be like this .... I fought really hard to get treatment...wrote letters to GP and researched info to pass to doctors.
I have since got some B12 treatment from NHS but have some symptoms that are permanent.
Common prior diagnoses on this forum are ME/CFS/Fibro...I was diagnosed with those as well.
Any chance of internal parasites eg fish tapeworm? One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count results. There are other internal parasites that are associated with B12 deficiency.
Have you seen your FBC Full Blood Count results?
There can be clues on this as to whether B12, folate or iron deficiencies are possibilities.
For me its difficult to accept that I supplemented prior to testing. My symptoms were accelerating fast and I think I panicked that I wouldn't be taken seriously because of possible somatic symptoms, that it was all in my head or might get a normal reading anyway. And that the sooner I got B12 in me the better....
That was a clearly disastrous decision that created a Kafkaesque world around me where, without diagnosis, everyone thinks I have anxiety.
So rather than head to the hospital with my strange and urgent symptoms, which would probably have been a better idea to avoid all this chaos, I ended up fumbling through my own treatment in a panic.
Ive lost 3 months of work and my marriage is under huge strain.
I had an operation last year which very likely used nitrous oxide. I did have pins and needles leading up to that though, but doctors could nt diagnose then.
At least I discovered what it was in the end. Its just a shame that its left me with no diagnosis and a body in a mess.
Perhaps, if the MRI does show damage, it may lead to a late diagnosis. But my hopes aren't up on that.
The good news is I dont have Sub Acute Combined Degeneration of The Spinal Cord. So that's good!
But I have found that daily injections have taken a toll on my kidneys and potassium levels. I suspect its because Im using a 2ml saline full of Salt water.
Symptoms are better, so Ive taken a break to rest the system. I think EOD is more than enough from hereon
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