But 12 injections

[pamelashep]

Sorry typo error. Since having 2 B12 injections because B12 was low at 51 NOW have tremendous thigh, hip and back pain. Thanks

[Steap]

If I look back I actually feel worse since I found out I was low and got my levels up.

I do however believe I feel worse not that I am worse.

Those nerves that sense everything have been dull for years and the b12 turns the volume back up.

They also stimulate themselves in an attempt to repair.

Your brain has been using a hearing aid for years to amplify the weak signals so it too needs to learn to cope with the loud signals and then to ignore them once it's gotten the message.

It can be very overwhelming at times if not a tad frightening.

It's no walk in the park and can take an awful long time.

[pugdogs10]

Or... pamelashep it could be a complete coincidence or maybe because you are more active since starting injections. By the way you are probably aware but your B12 level was very,very,very low which makes it much more likely you will feel worse before you get better and it may take a while before you see any improvement.

[Foggyme Administrator]

Hi Pamelashep. pugdogs10 is right..at 51, your B12 level was very low, putting you in the severe B12 deficency category.

Just to say I hope your GP has you on the right B12 regime, namely, if you have neurological symptoms, after you have had the loading doses you should continue having B12 injections every other day until your symptoms stop improving (this can take many months). Your GP may not know that (many don't).

It's really important that you have this treatment if you have neurological symptoms since under treatment of B12 deficency can result in potentially irreversible neurological damage (not saying you're going to get this - just want to make you're aware so that you can ensure that you're getting the right treatment).

I don't have time for a long post at the moment (sorry) but if you read through all the PAS pinned posts to the right of this page when you log on (or at the bottom if you're using a phone), you'll find lots of information about B12 deficiency and its treatment.

If you have any questions or want more advice once you've read them please put up a new post and people will pop along to try and help you.

Take care 👍

[Steap]

Hi Foggyme its nice to see you back on here. I finally got a consultant to agree I need injections but sadly he won't sanction the neurological regime so he's writing to the Gp to prescribe loading doses and three monthly injections.

It's the start I wanted if nothing else as it gets me my first lot under supervision.

I'm very very tempted to do every other day at home once I've gotten started.

Just sat hoping the Gp doesn't still put a spanner in the works because the practice seems so in denial about b12 it worrying.

[Foggyme Administrator in reply to Steap]

Hi Steap...and thank you 😄.

Really pleased to hear that you're finally getting some treatment.

And yes...GP 'denial' about B12 deficiency is, as always, a worrying problem.

Perhaps once your treatment is underway you could write to a named GP in your practice, outline your concerns (and neuro symptoms), request the neuro regime, and include relevant guidelines etc. Also perhaps include information about subacute degeneration of the spinal cord, stating you are concerned that you are being exposed to this potential if they under-treat your B12 deficency. I'm not suggesting that you are - but this is a way of sharpening their minds and members have had success in the past by using this approach.

And as you say...SI is an option if it's the path you choose to take.

Good luck...let us know how it goes...👍

[Steap in reply to Foggyme]

I'm just grateful the consultant agreed to the injections. The blood test they did came back at 900pg but he agreed that me supplimenting 5000mcg of jarrow methyl an hour before would skew result.

My latest serum level was 519pmol/l (703pg/ml) so I'm not entirely sure how much difference the injections will make but I have everything crossed.

I'm still wiped out and have burning skin, a thick head, anxiety, shortness of breath, shoulder blade pain (left), tinnitus & tingles. Despite being on sublingual b12 since November and getting my levels up.

The physician is taking advice from a neurological colleague because I do have something 6x4mm on my spinal cord 🙁

[KDSeabourne]

The b12 injection takes between 4-8weeks to become effective as this is the time old cells die and new are made 😶just hang in there. I used to feel numb before I ever had injections but had issues with shooting pain and breathing etc. Since last year I can say I think I'm on the mend my old thought thinking Is back but still stutter when thinking.

[pamelashep in reply to KDSeabourne]

Thanks for info and do hope you continue to feel better. It's my husband who has this problem, and he has been feeling not good for at least 3 years. In desperation we both had the blue horizon blood test. Me because of under active Thyroid and my husband because over the last 18 months he has had at least 3 blood tests and they have shown nothing. He had another blood test at the dr's last Tuesday before starting the B12 and it showed maybe there was a little problem with the B12 but not really anything to worry about and it was only 7 days after the blue horizon blood test. I can't believe there would be that much difference in the blood test and certainly on the dr's test he wouldn't be getting the B12 injections. Have been told that the test the dr's do is not very reliable, but know no the difference between the two tests. Take care and thanks for replying.