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You are all very kind with your advise but since my bravery yesterday I am feeling very poorly today .

Andypandy30 profile image
24 Replies

I feel so weak and the brain fog is terrible I am going to order what I need but for now the only thing I gave is the b12 boost spray ? Which I just bought a few days ago and haven't used yet . So until my injections arrive and I feel able to manage that is it ok to try this ? It says methocyabolmin on it and I get hydroxocabalmin in my 4 weekly regime with gp . I got it last wed so not feeling any better . Is it ok to mix the type ? Sorry if I sound stupid I'm just so anxious and spaced out I'm worrying about everything . See my post from yesterday if Iv confused you all x

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Andypandy30
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Gambit62 profile image
Gambit62Administrator

No problems with mixing types of B12 - and no problems with using the spray -

However, some people do find that methyl doesn't suit them personally - it can cause headaches and for others it causes anxiety so if you find yourself feeling more anxious than normal it might be better to stop.

clivealive profile image
clivealiveForum Support

I have cyanocobamalin injections every three weeks and use a methycobamalin spray between injections without any problem

Andypandy30 profile image
Andypandy30 in reply toclivealive

Thank u Clive . Can I ask why you have cyanocobalamin injections x

clivealive profile image
clivealiveForum Support in reply toAndypandy30

Simply because I was started on cyano every four weeks back in 1972 and when hydroxo was introduced in the mid 1980s I had an allergic reaction to it and couldn't last the three months so have continued with the cyano ever since & I'm still "clivealive" and over 75 :)

Andypandy30 profile image
Andypandy30 in reply toclivealive

Thank u Clive .

Andypandy30 profile image
Andypandy30

Thank u gambit i a mother in process of ordering what I need for injections just needing something in the interim . I don't know why I feel so down and anxious just at end of my tether with how I'm feeling x

deniseinmilden profile image
deniseinmilden

I found the B12 Boost spray very effective short term until I could get my injections sorted out and still use it occasionally if I get a set back.

I found it most useful if I had one spray under my tongue at a time, spaced out through the day, rather than four at once.

At my worst it would help to clear the fog for a while but not for long so I was using many sprays per day and therefore exceeding the recommended dose but was still OK.

As Gambit says its worth trying. If you don't like it then you can stop using it and it's effects will wear off quite quickly.

Andypandy30 profile image
Andypandy30 in reply todeniseinmilden

Thank u x

Andypandy30 profile image
Andypandy30 in reply todeniseinmilden

Hi I have an app with gp in the morning I have all the info from Martyn hooper I really don't know wether to bother .?

deniseinmilden profile image
deniseinmilden in reply toAndypandy30

I can't advise on that one other than suggesting "nothing ventured, nothing gained"!

Unless maybe you ask them to teach you to self inject...?

If you do your own jabs, you will be in control of your own destiny.

Good luck, whatever...

Andypandy30 profile image
Andypandy30 in reply todeniseinmilden

I think ur right . How will I know how much I need is it just trial and error and also there is no way theyl show me it's been hard enough to get to this stage . X

deniseinmilden profile image
deniseinmilden in reply toAndypandy30

I think what most people do is do another jab when they feel they need it. If you do that each time you will soon get an idea of the frequency you need.

For some people monthly or weekly is enough, others need a jab every other day while quite a lot of us need daily jabs. I use 1.5mg in 1ml hydroxocobalamin and some people use 2 of these every day to feel well so don't worry about it - if you need it, you need it!

You will probably also need supporting supplements to make the extra B12 work - a broad spectrum multivitamin and mineral supplement plus extra folate (folic acid tablets), maybe potassium, magnesium and iron (ideally from your diet but there are supplements available if you need them).

Andypandy30 profile image
Andypandy30 in reply todeniseinmilden

I was just about to ask this thank u . What is the reasoning behind this and why is a b complex needed also x

deniseinmilden profile image
deniseinmilden in reply toAndypandy30

The B12 is used alongside other vitamins and minerals in chemical reactions in metabolism to release energy. You need all of them to make the whole thing work.

Andypandy30 profile image
Andypandy30 in reply todeniseinmilden

Thanks I wrote a wee reply can you let me know what you think x

deniseinmilden profile image
deniseinmilden in reply toAndypandy30

Hi!

I don't think I can see your reply... Sorry! 😊

kate6777 profile image
kate6777 in reply todeniseinmilden

Can someone give me some advice on where I can purchase the spray? (UK) Thanks

pitney profile image
pitney

I inject once a month and use the B12 Boost spray twice a day as and when I need it, I do find it helps, hope you start to feel better soon but take things gently it may take a while before your injections start to work

All best wishes

Andypandy30 profile image
Andypandy30 in reply topitney

Do you self inject ? As I am getting my injection through my gp 4 weekly but it is not enough for me at all . I have an appointment tomorrow and have all the info to give her I just don't know if it's worth pursuing as I'm so fed up begging for treatment .

pitney profile image
pitney

Yes as I said I self inject once a month and have done so for the last 7 months as I also got really fed up with feeling so ill and constantly having to ask for my injection early only to be told to hang on another week or so it was really getting me down, but be prepared not all GPs would be happy with you doing this try and get some support either from your GP or a practice nurse if they are willing.

Good luck and all the best

Andypandy30 profile image
Andypandy30 in reply topitney

Thank u I have an app in the morning I will try her again . She has previously agreed to once a month . I doubt she will change her mind but will discuss my intentions as like you it is getting me down and physically I am getting so bad x

Andypandy30 profile image
Andypandy30 in reply topitney

I wrote a wee reply let me know what you think please x

pitney profile image
pitney in reply toAndypandy30

It seems to me that most of us that have been given a diagnoses of B12 dificiency or PA and are still not feeling well after treatment by our GPs do as much research as we can, take everything we find in with us on our regular visits and just keep pushing for more help. Then at the end of the day if thats not working we all seem to try and find something that works for each of us but only you can decide what that is. You say your GP has offered to refer you to a endocrinologist , do you think it might be worth a try as they may just come up with an answer or possibly be able to rule other things out.

Good luck and best wishes (sorry I didnt get your wee reply)

Andypandy30 profile image
Andypandy30

Well I slept in due to exhaustion and left a message for her giving all the details about neurological symptoms and the info from Martyn and got what I expected . That she has to follow her guidelines and she would refer me to endocrinologist if needed for a specialist to prescribe more frequent injections ! Absolutely livid . Such a cop out ! And to boot a waste of resources .im so glad I didn't go as I would have wasted so much energy and for nothing . So my options now are taking my own health back as she would rather leave me unable to function properly while waiting for another app from the hospital to do what she should be doing in the first place . 😡

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