I only ask as I know I've read somewhere that it can take up to 6 months before any real change is noticed in people who have had a real deficiency for years without treatment, I just can't find those posts/articles anywhere!
I've only had 5 shots in the last few weeks, along with a supplement on the days I'm not injecting myself. The injections have been okay, although I'm still very nervy even with the auto injector and I think I hit a vein last week which increased the stress the next time!
I felt a slight improvement last week, after 2 injections in 3 days (I'm still experimenting), my awful breathing problem wasn't as bad and I felt like I had a tiny bit more energy. But I wasn't able to inject again til Friday morning - a gap of about 6 days - and I really started to feel it.
But I know that symptoms/suffering can increase before improving, I've read that much in testimonials, etc on here. I'm prepared to go through that if it means I'll see improvement at some point, just curious as to when repair to those damaged nerves, etc will likely to start showing for me?
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DaveT81
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DaveT81 - there isn't an easy answer to your question. B12 is used by a lot of processes that go on in your cells and the same symptoms may be the result of different processes going wrong.
If you have macrocytosis - red blood cells that are larger and rounder than they should be that will correct in a couple of months.
Neurological problem caused by damage to the myelin sheath that insulates nerve cells will take much longer to heal, and in some cases it won't heal at all.
By contrast, the role that B12 plays in recycling neurotransmitters means that some neurological and possibly neuropsychiatric symptoms will recover much quicker .... though ironically this may lead to experiencing more aches and pains for a while (whilst your brain adjusts to the changes in signals - a bit like having turned a badly tuned analogue radio up so you can hear a station and then the signal improves and it is deafening).
B12 also plays a part in the efficient running of the immune system and this also tends to bounce back quite quickly. Again this may not necessarilyt be good news in the short term as many of the things we associate with being ill - temperature, runny nose. are actually ways the immune system fights invaders, so again, you could feel worse before you start to feel better.
I believe the usual reckoning is that there is a 6 month window on correcting problems caused by damage to the brain from B12 deficiency.
Many people still experience problems relating to B12 deficiency even after they are on injections and for many they are recurrent problems that come back when their B12 starts to get low again.
Gambit62 - thanks so much for your full and thorough response.
I'd suspected (and actually previously read) something along the lines of your answer, but just wanted confirmation. As I said, my symptoms are many and varying degrees of severity. Chief amongst them a crippling breathing problem.
Now I'm not suggesting this is caused by a B12 deficiency, but it is certainly a knock-on effect of some of the neurological damage, I believe. As I said, after 2 injections in 4 days, I noticed a slight easing, so I'm trying to feel that optimism.
I'm just glad to know that I shouldn't expect anything major for a while, and I'll keep plugging away with the injections in the meantime. Thanks again!
It's best if you can to do every other day until no more improvements . It's in the guidelines. I had a 5week pause before managing to continue thus regime adtercthe initial 6 . As I 2as supposed t8 wait 3 months.
If you find IM too difficult why dont you do subcutaneous injections? Thats what I do at home with an IM one every 6 weeks at present. (Was 4 weeks) I was told the first 6 months - a year the most repairs to my brain happening but possible after that at a slower rate by a neurologist. He also said to keep my b12 levels up.
I wad breathless part if the problem for me were ferritin levels dropping.
So get regular folate ferritin iron vit d thyroid function bloods done . Thars what I had every 3 months . Hope you see improvements soon. It's a rollercoaster
Thanks Nackapan, I'll look to push to 1 every 2 days then this week. I have about 95 ampoules still, and I may just go ahead and get more soon so I'm stocked up.
Just need to get more syringes and needless and I'll be set for 12 months or so. To be honest, injections aren't a major problem for me at all. Giving them to myself is still a bit nerve wracking and I'm paranoid about hitting a vein. I'll hopefully get over that after a few more injections, though!
Most people with a B12 deficiency have been ill for many years before they get diagnosed and treated. Over those years you're likely to suffer from some of the normal ravages of being many years older.
I think I was hoping that my diagnosis would mean that I could get back to the fit, healthy, being I had been before I started slowing down eight to ten years previously.
Now, I have to accept that some of that slowing down really has been caused by the years, in addition to other, non-B12 related illnesses.
So you may have to accept that some of your symptoms aren't the result of the B12 deficiency, or that the deficiency was so bad that some problems may never get back to normal.
Yeah, I'm open to the idea that my old life is behind me. Although, I am only 39.
However, I'd like to think that the B12 - over time - can give me even 5-10% back. The CFS/ME, along with other ailments, has reduced me from my previous 100% to about 40% on a good day. I mean, it may make absolutely no difference at all for me but I have to cling to something! In the meantime, I'll continue the injections and just hope.
Hi Dave - I totally feel for you. I have M.E and have done for 15 years. I am clinging to the hope that more frequent b12 injections will improve things for me. I am going to start injecting every month. I am 43 years old and feel ancient. I suspect that the b12 will not be a miracle cure for me - but I feel I need to persevere with it and I really hope to see some improvements. I get short of breath when my b12 is low - and I dod see an improvement in this after an injection. Good luck with it all!!
Same here Jenny. I've only been diagnosed for less than a year, but had it much longer and although we're told it isn't a progressive illness, it certainly feels like one. I'm actually injecting every 3 days currently. I have 90 or so ampoules so I'm just going to go for it and see how it helps.
I tried 6 injections 18 months ago over a 2 week period and it definitely boosted me slightly but then I had to stop, as I was paying for them privately and those 6 alone cost over £150. Being able to import from Amazon.de is a great thing though.
I am not asking for a miracle either, but I'll take getting a percentage of my life back, as right now I don't have one - it's 3 half days at work, then schedule the odd walk around the area until I feel like I might collapse on my days off. At 39, that is not the life I wanted to be living!
yes, I totally understand this. I do a bit of work from home (as a artist). It basically keeps me sane. With regards to the progression I sometimes feel that I am getting worse - but then at other times, not so much. I try and stay positive. Over the course of the past 15 years I have not declined massively. Although, at the time when I first got sick I had three boys under the age of five - so it was very difficult time. I think pacing is the key - but so hard to do this when you want to do lots of things (in your head anyway!). Both my sister and my dad had M.E - and both recovered - so there is hope!!! I only found out last year that my vitamin b12 was terribly low. I was so angry about it at the time - because it had never been tested previously. I still think it is a large factor in certain health issues that I suffer - but probably not the only one. I just try and do all I can to help myself - but it is exhausting! Hope you see slight improvement. Or lots of improvement!
I have had deficiency symptoms along with other autoimmune problems since my early teens and by 42 had got to a point of could barely walk or talk. I'm 48 now and although I am obviously older and now have other additional issues with malabsorption and metabolism of nutrients, after 5 years of daily SI, I still am getting noticeable neurological improvements.
Roughly the most gain (and pain) is seen in the first 6 months and then you are likely to get month-by-month comparabley noticeable improvement over the year after that.
For the B12 to work properly and heal all the damage you will need a wide range of nutrients and will probably benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium, iron and vitamin D, ideally from your diet.
If anything gets in short supply the rate of improvement will slow down and so increase the time to achieve full repair - but it doesn't mean that it won't start again if you restore the optimum balance.
Always have an open mind about other potential problems but otherwise keep up your faith in it working, keep going and be patient!
Yeah, at the moment, I'm taking a lot of supplements. Many I was taking prior to B12 shots.
Currently taking magnesium, potassium, amongst a few others. I have to take higher doses due to IBS issues and I badly struggle with iron supplements for that reason too. I may look at a multivitamin to add in as well.
I had been generally fit and healthy until I was diagnosed with atrial fibrillation 4 years ago, it's all been downhill since. My heart has been ablated but it still causes me major problems with irregular beats, breathlessness, dizziness. I also have ME, which increases any fatigue 3-fold, so it's hard to know where all of these issues are coming from.
All I do know is that Sarah Myhill recommends B12 injections for ME sufferers, and I'm glad that at least one doctor does so I'm going to give it a shot (pun intended!).
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