Newbie here with aching limbs

[Morphaplasm]

Hi everyone, I was diagnosed with b12 level of 107 last September, I then had 2 weeks of 6 injections in October, then a booster 3 months later earlier this month. I guess my query is, is it normal to feel worse now than when I was originally treated? My muscles in my legs and arms are constantly aching with a weird sensation to them, if I knock my elbow against something, it is extremely painful, like stubbing your toe and waiting for the pain that surely comes along. The aching wakes me up most nights on a regular basis, and I have resorted to taking paracetamol and ibuprofen 3 times daily for the pain. I understand what the b12 injections are doing, but just wonder if I should be feeling this way? I saw my go a few weeks ago, who poo pooed the pain and said that it was normal to feel like this, but sent me for a blood test (780) and tested for pernicious Aneamia, of which I have not heard anything back. Thanks for your help.

[Nackapan]

The timing is the same as Me. Level 106 serum b12. In Oct 2018 How were you after loading doses and waiting for the injections 3 Months after?

I certainly felt alot worse after first loading doses but improving now but on every other day again as symptoms neverror really went and we're coming back.

Sounds odd you worse than when originally treated. Having the injection could have surfaced stuff not healed yet? My legs kept me awake last night every time I tried to lie in my side. But ok after a bath. Did you ever get a period free of the pain?

I'm told by all still early days. ...not that it feels like that. Keep a diary perhaps to monitor . Is your pottassium and other vits like D okay?and bloods might show something. I wish you well

[Morphaplasm in reply to Nackapan]

Thank you for your reply

[Gambit62 Administrator]

The test for PA - IF is extremely insensitive so a negative result will be a long way from proving that you don't have PA ... but it is quite specific, so a positive will be good evidence that you do have PA.

I experienced a lot of leg pain in the 18 months after diagnosis - it went when I finally managed to get and keep my B12 levels where I needed them to be - which mean much more frequent top ups of B12.

Suggest that you keep a diary of symptoms.

You could also try pointing out to your GP that, as you have neurological symptoms the treatment regime for B12 recommended by the BCSH is more aggressive - loading shots every other day until symptoms stop improving, followed by maintenance shots every 2 months. They can access the guidelines through the BNF.

780 is potentially quite a low level for someone post loading shots - many people need to maintain much higher levels, often well off the top of the normal range. This isn't very clear in the guidelines, though they do make it clear that treatment post loading shots should not be based on results of the serum B12 test.

[Morphaplasm in reply to Gambit62]

Thanks for your reply, I will revisit go and push for more injections. Thank you

[Ritchie1268 in reply to Morphaplasm]

Hi,

I didn't notice any improvement at all after my loading doses.

I would do what Nackapan suggested & keep a diary which is what I did.

My B12 was 125 when tested in May 2018, along with Folate deficiency & PA.

After my first 3 monthly, 3 days after I felt the best I'd felt for years, 3 days later, my legs were constantly aching 24/7 right up until my next 3 monthly. Again 3 days after I felt great, but for only 3 days. I told Dr I wanted more regular injections, he agreed if blood showed B12 was low. Obviously it wasn't low so he refused.

Since self injecting every other day or so, my legs & other muscles no longer constantly ache anymore.

Good luck

[Morphaplasm in reply to Ritchie1268]

That sounds encouraging Ritchie, thank you

[Dawn45]

I was exactly the same keep mythering doctors I've now got ME and nerve damage the pain started in my toe or all started with b12 felt worse after x

[Morphaplasm in reply to Dawn45]

Thank you Dawn, I will look into self injecting

[Dawn45 in reply to Morphaplasm]

Yes I was going to but my doctors said I shouldn't as you don't know how to inject.. I hope you feel better soon x

[Morphaplasm in reply to Dawn45]

Thanks Dawn