Just deflated. In short, two yrs ago I developed scary neuro symptoms after being on b12 injections administered by nurse for about 6 months. I had had mild neuro symptoms before injections but only realised this post injections I.e. once they had gone away. I tried to talk to my doctor about NICE guidance around more frequent (than 3 monthly) injections for neuro involvement. I was not listened to. I tried again with another doctor who at least referred me to a neurologist for investigation. He said my b12 levels were too high to be the cause. I tried saying how blood test results become irrelevant once injections have started but was not listened to. All of this was causing me a lot of stress and anxiety which was wrecking my personal life, causing me to question my own sanity and making it nigh impossible to function - not least with the symptoms too! I looked into self injection and, with many misgivings, began. Two years on, I am on a roughly monthly regimen which I find is affected by things like how much I’m working, anti biotics... etc. There has been no return to my scariest symptoms. Though there are peaks and troughs I am able to have days where I can honestly say I feel completely fine. It has been years since that has been the case! I am starting to look forward to returning to my performance career again. I am learning when I need to inject because of warning signs like insomnia, persistent negative rumination, chronic depression, personality change and unbearable back pain. A B12 injection sorts these out very quickly. I am still slowly progressing a track of diagnosis with the neurologist. I am letting her do all the working out and have said nothing about my conviction that Pernicious Anaemia is the problem and I feel I am managing it. I have learnt that starting off with that does not get a good response from the medical profession in general. She is booking me in for a lumbar puncture soon because of some worrying results to tests which indicate possibility of MS. I tried not to worry about this too much as I hope the puncture will indicate it’s not MS and maybe then this will open a conversation about spinal issues that may be attributed to PA (not having been diagnosed for many years). I may be wrong about this but it is the most likely explanation in my opinion. I do not know where I would find an expert in PA but perhaps a neurologist is a good start. Anyhoo, I saw my doctor this morning - I have changed practice and he seems a nice chap who cares a lot and I am trying to work gently with him. I do not want to alienate another doctor. He has been worrying about low ferritin and vitamin d and concerned about high folate and low neutrophils. I have been getting lots of infections lately and asked for some insights. I have been supplementing so we keep going over blood test results. I had also asked him to monitor my thyroid. He told me my tsh was normal (under 10!) and I have no anti bodies so no concerns there. I need to take iron for longer. He was puzzled about my folate. I ex0ained I take folic acid because it helps with b12 absorption. He pointed out that my b12 levels are off the scale, which stops at 2000, so I don’t need it. He noted that I haven’t been booked in to see the nurse to receive b12 injections. I told him about self injecting and what had prompted this. He was very nice but also very cross. He advised against self injecting and told me to pursue the neurology investigation because that was the key to getting the right outcome. I did not want to argue with him and didn’t have the facts to hand. I feel very low now because I can see no alternative but to show him how it is by reverting to 3 monthly injections. But I don’t want to feel like that again! Perhaps he is right though. I feel like I need an army of experts to make my case and crack this. What to do? Is it MS? Does any of this tale strike a chord with anyone else here? All advice appreciated.
MS?! Doc not supportive of S.I. - Pernicious Anaemi...
MS?! Doc not supportive of S.I.
Sorry to hear of your troubles. Unfortunately, few neurologists understand B12 deficiency/PA. I went for a complete MS and Epilepsy workup by a neurologist. I came back with antibodies to myelin basic protein in the blood and he said, "I don't know what is causing that" as I had no lesions on my brain. He did not do a lumbar puncture. Shortly after that, my private practitioner took it upon herself to do a full PA workup and that is when she discovered the PA/B12d which explained the antibodies to the myelin basic protein and seizure like activity. Fortunately, she recognizes the need for frequent B12 injections and once I presented her with the guidelines that I downloaded from here, she readily agreed to every other day until symptoms stop improving. She has told me that it may take a long time to get any improvement with my cognitive and other issues but I do feel fortunate that she at least acknowledges that it is the B12d that is the underlying cause.
I say all of this to prepare you in case your neuro is not well informed on PA/B12d. It sounds like you, yourself, have a firm grasp on the situation. Please be aware, long term PA/B12d can cause not only the antibodies to myelin but also lesions on the brain and spinal cord and degeneration of the cord. These are all markers for MS so there is a very strong overlap between the two. I am not a medical practitioner so this is not medical advice but there is no way I would give up on the B12 injections if I were in your place.
Best to you and hope you find your neuro better educated than most.
Hi,
I hope you find the answers you need.
Links about MS and B12 deficiency
mstrust.org.uk/a-z/vitamin-b12
If you feel your GP is sympathetic you could buy him a copy of Dr Chandys latest book on B12. It talks a lot about MS and how similar it is to B12 deficiency - probably/ possibly one and the same.
The book is written with doctors in mind and it not expensive. It’s called “Vitamin B12 deficiency in clinical practice”
You could highlight the bits that are relevant to you, discuss these with him then leave him the book to read through in more depth.
All the best .
I bought one for our GP practice but you can request one free for your doctor - here's some info:
If you are a doctor or want to request a copy to give to a doctor (in UK), please send an email to notifications@b12d.org with SUBJECT: Doctor book scheme, YOUR NAME, POSTAL ADDRESS, PHONE NUMBER, and REGISTRATION (GMC / NMC / HPC number).
Hope that helps
Sorry you're struggling.
I was lucky when I was sent to a Neurologist that diagnosed small fibre neuropathy. I was offered Amitriptyline or some other medication that's an antidepressant that helps with nerve pain, but I refused any medication. I told her I self inject B12 every other day & was surprised when she said to carry on doing it. It may heal the nerves in time but it could take a long time. So I guess I am one of the few lucky one's to find one who knows about B12 & PA.
Many get misdiagnosed with MS. Hope you get the right help you need.
If you do a SI every other day how much B12 do you use? It must be a very small amount. I am getting ready to SI and was interested in the amount needed weekly. Thanks for any info you are able to share.
They come in 1mil ampoules. If you need to know where to buy all you need from, wedgewood has some great informative posts on all that is needed.
So sorry to hear your woes, one of my doctors thought I may have MS and ordered an MRI scan of my spinal cord and brain, because of neurological symptoms and she knew I was SI. The SI was helping, and I was advised to stop. I didn't. My MRI came back with a spinal stenosis, I was given naproxen and a review date next year. I still SI every sixth day. And things are going well, I have a 250mg naproxen once a day. I am waiting to see a surgeon for both my knees with a view to replacement. I aspirate my left knee of excess synovial fluid once a week and it now is 90% of perfect. While my right knee continues to deteriorate. I feel I have stumbled upon a therapy that works, as my surgeon appointment may take four years (being in Wales) I may use the same therapy on my right knee in the next year.
I was lucky, my doctor was willing to listen and even went to ask a biochemist and they said levels should be above 400, but 'go by the symptoms'. I had a trial of 2-monthly, then down to one monthly, which I have been on ever since 2015. This year I decided to self-inject as had queasiness and diarrhoea since 2005. I started in April this year and it has worked out roughly to every 10-12 days in between gp jabs. Didn't make any difference to start with but in the last 6 weeks I have had no stomach problems. I am monitoring this with notes but at the moment I am hopeful that the more frequent injections are helping my stomach. I started straight off with intramuscular into my thighs, which I alternate each time. I keep a spreadsheet of the injections and any good or bad points that happened. I was also interested in your what you said - 'I am learning when I need to inject because of warning signs like insomnia, persistent negative rumination......'
I have had insomnia for 30 years, varying between chronic (up all night) and just very bad, I am waiting to see if this improves on more injections. The phrase that stood out was ' persistent negative rumination'. This has been me exactly for years and I have never read before anyone who thought this was attributed to needing their B12, so it was very interesting to me. I thought it was just me getting more and more miserable and negative - going over and over things that have happened - should have done this, should have done that, nothing will be right, feeling stressed about absolutely everything even though I haven't really got anything to worry about, apart from getting health sorted.
I was sent to a neurologist 11 years ago as I have neuropathy in my feet and they did nerve conduction tests and it was after that I got a call from my gp to come and have B12 injections. I did NOT have every other day 'until no further improvement' which are in the guidelines, though I have quoted it to them since, so I don't know if that helped in me getting monthly jabs (I really wanted them to go back to the beginning and to give me every other day which I should have had at the start, though don't know when those guidelines came in). I know someone with back problems (had operation), can barely walk, on monthly B12, all symptoms of low thyroid too and I believe he could have degeneration of the spinal chord. To me it is crying out this person needs even more injections. After reading Dr Chandy's book, I am wary when the doctors start to say MS as B12D can look like MS.
I am still battling thyroid levels with doctors as I believe I have every symptoms indicative of underactive, but can't convince them yet as they want the numbers to be over 10, as you say.
What about trying every other day injections to see if that improves things for you and don't wait until symptoms return, perhaps keep them in check?? There are far more knowledgeable people on here than me and I know also it is hard to go up against doctors. Good luck.
Mountain ice thank you for your account. So good to hear sometimes, that someone else has a similar story. There are definite similarities here. Thanks.
Keep your own logbook of your daily assessment of your symptoms to help sort out the symptoms from the deficiency from the new symptoms of neurological repair.
Provide a typed copy to your GP at each visit to give them evidence that your treatment is progressing in the right direction. Repair of neurological damage is very slow over months and years so stick with what works when comparing month to month. (Or jab to jab).
Are you supplementing with a daily multivitamin and folic acid as well?
The symptoms that show up after you start injections are from repair of neurological damage. The brain takes a few days to figure out that the signals are stronger and recalibrate to turn down the volume. These symptoms can appear to be pain or hunger. Mine is aggression and a headache. These are hard to ignore but I find that if I get on with things while telling myself that these are “good” indicators that nerve damage is getting repaired, they disappear faster.
This is good advice. Thank you. Reassuring about the neuro repair symptoms! I was taking multi vit and folic acid but my doctor told me to stop. I explained I was doing it to aid the efficacy of frequent SI. Conversation went downhill from there, so I still don’t know why he doesn’t want me to supplement.
high levels of B12 in blood
Feeling Worried and Frustrated
Update
Neurology Doc advice
