Am finding everything worrying.

[Winterlight]

Hi, I’ve very grateful for the good advice I’ve received on here over the last week or so thank you.

This afternoon I will be receiving my third loading b12 injection. So far I’m still worried about my symptoms. My main ones started over the bank holiday weekend recently. My comordination just isn’t right my left arm feels heavy and although I still have strength in my hands I’m getting clumsy dropping things and making lots of mistakes typing. I still have slight tingling in my feet and sometimes my hands. The strange symptom of what I can only describe as an internal buzzing sensation has now gone which is good.

I also find I am using the wrong word here and there and even when I’m thinking. I can’t help worrying it’s more than my b12 being low although(122) I know it can cause lots of neurological problems. Does anyone feel the same? I’m also finding I’m actually feeling really tired since having the two loading doses where as I wasn’t before. Does anyone else here feel like that?

Sorry I can’t help worrying and to make matters worse it’s almost impossible to see a Dr certainly the one I prefer who actually diagnosed me with this b12 deficiency in the first place. Maybe I’m expecting too much too soon after only two injections but I only have three more to go before it’s one every three months.

I should add I’ve been a vegetarian for over 30 years and was almost vegan leading up to this problem. I’m trying to sort out my diet.

Any reassurance would be appreciated. Thank you 🙂

[topazrat]

Hang on in there. Its very early days in your treatment.

It sometimes takes quite a while before the injections make you feel better, sometimes weeks, sometimes months or more. It is often a slow process of feeling better day by day than waking up one day and feeling great.

Its also not unusual to feel worse before you feel better, as the B12 starts healing things that have been without it for a while.

That internal buzzing is so odd isn't it - I had it before diagnosis and occasionally now when I'm due a jab.

I'm sure you will get many other people coming along and reassuring you that what you are feeling is pretty normal.

[Winterlight in reply to topazrat]

Thank you so much for your reassurance topazrat 🙂 I am being impatient I know it’s just that another symptom (lips and tongue tingling has come back) I think because my sister died from a brain tumour and husband died last year with no warning it makes me worry more.

Yes that buzzing is really odd. I also get heart palpations and hot flushing and a feeling of what I can only describe as a head rush. I have to say the palpations have calmed a little after these two injections.

I have been on meds for high blood pressure and rapid heart beats for five years and I’m now wondering if it was caused my this deficiency even then as one Dr missed my levels being low over two years ago too.

I hope you’re doing well x

[Gambit62 Administrator]

a) anxiety is a symptom of B12 deficiency

b) nominal aphasia - difficulty with finding names/nouns - the right words - is an extremely common symptom of B12 deficiency

[topazrat in reply to Gambit62]

Nominal aphasia - commonly called brain farts in my house

[Winterlight]

That’s interesting I will look into that thank you again

[KimberinUS]

Definitely normal.

I was desperately looking forward to the energy i was so sure i would have once i got my injection. Instead i fell asleep for 3 1/2 hours. This is normal. Your body gets what it needs and basically has alot of repair work to do so you being awake or having energy is not your body's priority.

If you dont feel better after your loading doses you need to get ready to self inject for a while but since your likily cause of b12 deficiency is due to not eating b12 rich foods, i believe it is likily that you feel better shortly!

Hang in there

[Winterlight in reply to KimberinUS]

Thank you so much that’s very reassuring. I will look into the self injections as I haven’t a clue at the moment.

I will hang on in there and do what I can about my diet etc.

Hoping you’re doing well and thank you again

[blogsy2 in reply to Winterlight]

I wouldn't stress about the self-injection at the moment. If you ever find you need to do it, the support is out there to learn how. So you don't need to feel that you will be "cut off" without sufficient B12. However it probably is the case that you simply haven't been eating enough of the stuff. You may find that eating meat and using high-dose sublingual tablets or drops also help.

However I would say that, with your very clear neurological symptoms, you should ask your GP to continue to give you injections every other day as per the guidelines, until you see no further improvements. But you can also have the peace of mind of knowing you have other options if they don't cooperate.

Try to do something that you find relaxing and don't think about it too much. I think recovery from B12 deficiency is like "the watched pot" if you know what I mean.

[Winterlight in reply to blogsy2]

Thank you blogsy2 your reply is very helpful. I asked the nurse yesterday about continuing with the injections as there was no Dr available. She said they will be sticking to the plan of my five loading doses then one every three months. Well if my symptoms are really due to this deficiency then I’m almost certain that’s not enough. I’ve had the three injections so far and today my legs feel really weak and strange as do my upper arms and hands. I feel like I’m spaced out all the time. The nurse commented that my symptoms do not match a deficiency which really worried me but when I look on line they do. Although some are very strange. I’ve never suffered anything neurological before and this is frightening. And obviously she has added to my worries.

Thank you for all of your help 🙂 sorry late reply we had no internet around this area last night or this morning.

[blogsy2]

Hang on in there and keep us updated.

Make sure you're taking some folate to keep the B12 company, now that you've started the loading doses.

You might need to rest and sleep more, but that's a good sign that your body has started to repair. Your body has to put many vital jobs "on hold" whilst your deficient, so it all starts happening again once you have the nutrients you require.

Can you start eating liver once a week, or is that thought a nightmare? it's extremely nutritious.

[Winterlight]

I will look into the folate thanks. I’m afraid after being veggie/ vegan for so long I just can’t eat liver but have returned to my veggie diet so I can include dairy products. I have to do something I feel so strange and can’t belive these symptoms can all be related to lack of vitamin b12 although reading through the helpful replies I’m starting to look into it more.

[blogsy2]

Hi Winterlight,

Your nurse may know less than the doctors about the symptoms of B12 deficiency.

If you continue to feel worse as you go through the loading doses, I think you should make another appointment to see a GP as soon as possible. Tiredness is to be expected as is perhaps increased pain in areas that have had nerve damage (whilst the nerves repair). It isn't an instant fix, but if you're feeling worse, you need to be seen.

It's meant to be six loading doses, not five.

I can understand that you don't want to eat meat. However I don't think that the B12 you'll get through milk and eggs will really be enough for you right now. You should consider taking a high-dose B12 supplement. But continued injections would be the safer bet. Many of us have experienced difficulties in getting the proper number or frequency of these and have chosen to self-medicate.

I do hope you start to feel better soon.

[Winterlight]

Thank you again for your helpful reply. You must be tired of me and my questions😬

I’ve asked to speak to a Dr tomorow about the number of loading doses but they have said a Dr probably won’t be available. I won’t give up trying though.

I will be looking into the supplements as I have no idea what I need yet. I’m finding all of this really confusing. There seems to be such a lack of awareness out there about the importance of this vitamin and I had no idea!

My symptoms are definitely neurological but what I find strange is they lessen at night!

Many thanks for your help x