Just diagnosed and hoping for a better future.

[pedro3335]

Well this isn't a site i thought id be on a week ago! After years of chronic depression and 4 sessions of CBT I was advised to have a blood test.....turns out I've got b12 levels of 87 which seems to be pretty low. I've just had my first b12 injection and have a renewed hope that there might be an end to all the shite I've been putting up with for years. Anyone out there who can give me any idea what to expect next and will things get better now? Worried that I'm getting my hopes up too much. Any advice and similar experiences would be much appreciated. Cheers, Pete

[Rheadster72]

Glad you've got a diagnosis, Pete. You say you've had your first injection, but do you know what regimen the doc has put you on? Any other neuro symptoms going on?

[pedro3335 in reply to Rheadster72]

Ha...Thanks for replying! Just know it's 1 of 5 injections, this is all very new to me at the moment. Just had severe depression and memory loss but no physical symptoms that im aware of.

[Rheadster72 in reply to pedro3335]

That's your loading doses by the sound of it. 6 every other day right? The doc is probably very likely to put you on a once every 3 months maintenance after that. That's all fine if you don't have neuro symptoms. If you do have neuro symptoms the dosing is different. See how you feel after the loading doses then up to the next dose (dose 7) after that. And if you've any questions, post up; loads will give you help, advice and share their experiences.

[pedro3335 in reply to Rheadster72]

Thanks for your help, bloody weird experience!

[Gambit62 Administrator]

pedro - suggest you take a look at my profile.

very difficult to say what your precise journey will be but keep posting.

[pedro3335 in reply to Gambit62]

Wow, you had quite a journey there....you know what it's like to feel like yer completely barking as well then! Really glad it worked out for you, it's mind blowing to have such a simple reason for a lifetime of struggle.This is a great site and is rereally helping, thanks!

[clivealive Forum Support]

Hi pedro3335

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It is also important that your Folate level is monitored as this is essential to process the B12.

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

I'm not a medically trained person but I've had P.A. (a form of B12 deficiency) for over 45 years and I wish you well.

[pedro3335 in reply to clivealive]

Thanks for that, got a feeling I've had it for years, possibly decades but still it's amazing to get a diagnosis. Bit confused as to what to do now as the people on this site seem to know a lot more 5 han the medical professionals. Got a strange metallic taste in my mouth after the first injection and have found nasal sprays on the internet

[pedro3335 in reply to pedro3335]

Sorry, there's a glitch on this site and if you interupt

[pedro3335 in reply to pedro3335]

The message you can't get back on it again to correct mistakes. Was wondering if b12 nasal sprays are worth trying? Cheers, Pete

[clivealive Forum Support in reply to pedro3335]

If you click on the down arrow in the box to the right side of the "Like" button you can edit your reply and re-submit.

As to the metallic taste after an injection that is not uncommon or anything to worry about.

Have you asked your doctor or nurse about your Folate level?

[BethattheBeach]

pedro3335 I would keep a detailed list of your symptoms from before your treatment began. This was critical in gaining more regular injections of B12. Also you should ask for reasons for the deficiency- could be significant. Ask for an endoscopy and antibodies test, AIF (this can be unreliable but still worthwhile having ).

Good luck.

[pedro3335 in reply to BethattheBeach]

Thanks for that, will do, the nurse was very helpful but sounds like I'm gonna have to be very proactive about my treatment. Cheers, pete

[BethattheBeach in reply to pedro3335]

Yep, I'd read up on everything you can find.

The Sally Pachlock? video on B12 is a good introduction and is available online for free.

In my experience, there are very few practitioners out there who know enough to properly diagnose and treat B12 def.

I know my GP is finding a lot of B12 deficiency but she does not agree with nor understand why I need very frequent injections, twice weekly. I don't know why either but I do know that if I don't get the injection I rapidly become systomatic and that is awful!

[pedro3335]

Hi there, yes it's 5 injections spread over 3 weeks because of work commitments. It's a pretty steep learning curve at the moment!