I've started a new regime of 10 day injections. Sc... sc... IM. I used to get a headache after every injection . Thankfully not as often as not as bad if I do. Following my last injection i felt really 'shut down' so sluggish and so fatigued for 2 days Then today sudden weakness after my usual 1/2 mile walk? and vision problems again. I'm hoping change is a positive shift . Also if my head has less pain my balance is worse. Lsk Zeke every morning like I've got the flu (not good in this climate bug I've had this feeling for months. Because of shut down routine is there I eat well move ad mich ad possible all very boring as still csnt watch tv or read a book of garden or bend much. I even miss hoovering . Sounds odd but mh body now hates it. Even tried mopping floors and my glasses clamp az balance gets bad. I will continue hoping to get a positive shift. Does this sound familiar to anyone. ? I'm usually positive but am getting a bif worried now at the loss of any feeling of a ' normal for me at all'
Someone said they think I'm operating at 20% of what I used to before ill. That shocked me . As time goes on I'm normalise things that arnt usual . Any thoughts please?
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Nackapan
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I’m sorry you’re feeling rubbish Nackapan. I don’t have experience of the symptoms you describe so please feel free to ignore this but I just wonder if maybe some of what you go through is not B12 related? I say this as you feel fatigued after an injection, then have sudden weakness after your usual activity.
I do however recognise the feeling of normalising things that aren’t usual from before my PA was diagnosed and treated. By that I mean that I put down fatigue and brain fog to normal ageing and accepted it.
I hope that you improve soon, sending my best wishes.
No I’m sorry I don’t know what to suggest as I have no experience of the symptoms you mention. Except maybe starting again to look at other possible causes if a year of injections hasn’t improved these quite extreme symptoms?
Yes I'm trying that from 2 weekly to every 10 days at present . I tried weekly bit got too symptomatic.
I'm day 5 and have nausea and head pains .nerve pain in my skull and jittery inside vestibular disturbance. Back of eyes pain too. In trying to go with it . In bed by 7pm slow morning. Bit of pysio .
I was awful at first Nackapan but thankfully my symtoms are settling down I’ve just persisted doing the every other day self injections,maybe you need to try increasing to a higher frequency like this you may need this to bring you some relief from symtoms.I struggle to get beyond day three right now so I have no problem making the descision of injecting every other day.I hope you find something that helps you x
I think it took me over two years of self injecting every other day before I even caught sight of the old me occasionally. There were certainly times when I felt as if this was taking far too long and perhaps, after all, this was something else. But I have been tested for every single other thing, and had a lot ruled out.
I remember once meeting an ENT consultant, who was helping me with saliva duct and gland problems -and who said that I was displaying typical B12 deficiency symptoms, to keep injecting every other day and that I needed to persevere, because it would take a really long time. He was absolutely right. He had also read my GP's notes, had them to hand, could quote from them without reading and praised her detailed report.
Exactly the person I needed to see most at that time. Unlikely quarter. Funny how often that happens in life.
What I'm trying to say, in my long-winded way, is that while other things are being ruled out, it will become more and more evident that this is all due to B12 / not. Meanwhile, persist with the B12 as you will eventually see gradual changes - and if you don't or something else is found, it will have done you no harm.
When this lockdown is over, and things begin to normalise, you can start pushing for more tests and consultations. Meanwhile don't give up on your "old" self.
Thank you. Just been on a bad dip last few weeks /months . Ive not had respite at all yet. I actually slept well for a change but am worse for it??
I know I'm doing everything I can . Its early in the 10 day regime. I did have every other day for months then weekly then for the last year every 2 weeks.
No patterns emerging . It seems no rhyme or reason.
Last Septembet more headaches but more okayish days.
Yes am in the system for neuro opthalomogist since Jan. Have har loads of tests on my eyes.
Anyway.
2o months in I suppose still hope as things are changing. I will try weekly again or more if this frequency doesnt give more positive results. Tooth hasnt helped but its not infected.
No I wont give up on my old self .
Thank you for the hope to move on.
So unlike me to start wondering if I'm stuck like this.
I asked the neurologist that and he said no. More Time but then spoilt it by saying most healing done in first 6m to a year!
Yes it takes one medic at times. That happened for one of my daughters in a and e. He took I interest and got the right tests done .
I will keep plodding on.
Thanks for your reply.
Perhaps it's like childbirth when you hit transition and really csnt take anymore then it changes you csn push and you get your reward and pain gone.
(Obviously only for those that have had babies will get that )just popped into my head.
I think that you have worked hard to get this far with getting GPs and consultants to understand what is going on with you. I believe there is more that could be done to help you- but some of your symptoms are severe and unusual. Elimination of other conditions can take a while and each consultant will only look at possibilities within their own remit, without considering other symptoms or sets of symptoms at all - and this can be frustrating when dealing with a condition with so many symptoms coming and going randomly.
You are so right about patterns: I have been trying to make sense of mine with a daily symptoms chart for years now. No pattern, but very gradual (almost imperceptible) improvement - that I doubt I would've noticed otherwise. Looking back at diary from 2017 helps: didn't even remember some symptoms or how bad it was !
Finally I felt quite confident about reducing my injections to every third day. Most recent change during last couple of months: air-hunger (yawns) was daily and often - now usually only when injection due and not severe - just a reminder ! (One I can live with).
HLA B27 is a blood protein and is generally associated with autoimmune disease. The precise symptoms it causes isn’t always clear and are present in other conditions. One of the things it is associated with is eye complaints, ataxia Ear complaints, migraine and muscle aches. Often it is the first indicator of ankylosing spondylitis. My suggestion is you rule it out as it can be simply added to your blood test list.
I cznt understand the write up. I've not got arthritis . It's all nerves in my head and connections it seems. Firing off wrong signals and a vestibukar disturbance. Nuchal muscles continually contracting . No one has said how these will stop contracting?? All neurologist said was no quick fix and sent me on my way??
I will ask Gp when I next have contact also about MMA I think. Thanks
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