Hi again! Quick update.....had my six jabs,usually feel worse then a bit better after them so bit of a roller coaster right now. Seems I have a decent doc,nurses telling me different to her so had a follow up with doc who has signed me off for six more jabs as I'm not right yet then 2 mnthly or earlier if I need them. Nurses don't understand this and doc says she's getting grief about it but is sticking to the guidelines and not wavering! So there are good ones out there! I'm just looking for some views/experiences from others re memory firstly...mine seems rubbish still,I used to be switched on and organised now I can barely remember the simplest of things! Secondly ,seem to be getting itchy spots/bumps under the skin on my face,and wondering when my hair might get back to something near to half decent! at risk of sounding vain it's one thing feeling rubbish without looking rubbish too! On the positive....dizziness lots better,headaches no longer a daily event,breathlessness a lot better and some days feel way more cheery than I have before! This is such a weird experience,those close to me can't understand why I suddenly appear to be ill now I'm on treatment,when they thought I was fine till now. This thing was creeping up on me for so long that apart from saying I felt tired and always seemed to have a headache,the rest I didn't mention as I thought it was just me and I was lazy ,or not getting enough rest,stressed etc,I would have been continually moaning if I'd talked about how I feel all this time! Now I know I have something wrong it's allowed me to talk about it but it's made it all difficult for others to understand!
Sorry it's a long one but love to hear if this is similar to anyone else? And other experience of the spots,hair and memory. Also anyone whose had more than the six loading jabs and how they got on eventually? Thanks so much,this site really is a font of info.
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Janee635
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Hi, glad you have got a positive response from your gp, it will more than likely help you feel so much better about the whole thing.
The spots seem to be a frequent complaint from people as well as the feeling so much worse. It does seem to be short lived benefit at the beginning for many people, possibly the body reacting by saying' whats on here then, what am i supposed to do with all this new stuff coming in me'. But by having the frequent and more regular injections you should hopefully start to come out the other side and start to feel improvements. You could keep a diary which will help to show you and your gp if this is so.
Don't forget that you need to be taking good multivits and probably a b complex tablet too, to make the b12 work efficiently. As you see it is a condition which creeps over us and we unwittingly grow to accept all the little things going wrong and just put up with them, which with hindsight is silly of us.
So glad you've found a decent GP. It's amazing just how many nurses think they know more than the doc. Just ignore them.
I found the same experience with injections - felt rubbish for a day or so after having one, then much better. That went away after a while. The memory thing is slowly improving, but it's much better than it was originally - as is the brain fog.
I also have a slight spottiness, but I'm willing to put up with that for the benefits.
I couldn't give any advice about the hair - being a slap-'ed.
Didn't get spots - in fact probably the opposite effect for me - in that the spots I had from hormonal changes lessened. Hair took a month or so but noticed that it was feeling a bit thicker - can't remember what the rate of hair growth is but it's probably about 1-2 inches a month so if you use that and the length of your hair it should give you some guide.
Memory - mine was mainly associated with stress and being tired so was probably quite good once I started to get the amount of B12 I really needed as the stress and being tired all the time subsided. Never been really good with names and that hasn't improved. One thing to bear in mind is that we all have a tendency to remember ourselves as having perfect memories in the past when actually we didn't but slips were water off a ducks back ... however, you notice the slips more if you are looking for them so it may not really be as bad as it feels
Sorry but I'm short of time now (I'm getting ready to take 6 cattle to a show for 3 days - it is possible to do things again in time with enough B12 and supporting cofactors!!!) but if you'd like more information you could look up my profile and see my post "My Experiences".
I was very similar to you, including the spots. I welcome them now as it shows my levels are good and so I'm going to feel well. My memory, balance and so much more is still improving a year on from diagnosis and the start of treatment.
I can relate so well to the roller coaster, but I think I have realised that because my mood is better, joint pain easier and concentration better I have days when I do too much and pay for it the next day. I call it wearing my diving boots, feeling like I am dragging myself around. I now think rest is so important in healing process. I also talk about how I feel more and although I have a good family and friends they did not realise how bad I had been feeling. To be honest I didn't realise how bad I was until I had some good days. I empathise about the hair, mine is better than it was, as are my nails. I have pinked up and lost my yellow tinge too. My skin looks better and no spots but some itchiness. If only my pins and needles, tingling and tinnitus would subside. Been referred to neurologist so fingers crossed. Having alternate days injections at the moment. Everyone seems to progress differently but I agree this site is such a font of knowledge and personal stories that it helps a lot.
The guidelines say to give injections every second day until no more neuro symptoms and then every 2 months after that. I have been on 2 monthly for a year now though I feel it go down after 3 or 4 weeks. I still get the spots on my back. Hair loss stopped though. Brain fog, bad memory, poor concentration were all part of symptoms for me too and thankfully all cleared up a few weeks after injections began.
I stopped losing hair once I started taking B12. I used to lose hair from head, eyelashes, eyebrows and elsewhere. I had to resort to self treatment with B12 as I was unable to get B12 from NHS.
I get occasional spots but i take it as a positive sign that I have plenty of B12 getting through to my cells. I also feel that taking B12 may be stopping the onset of the menopause. My memory is better but still have foggy days.
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so it may not really be as bad as it feels
No more injections for 3 months
