How normal are big ups and downs in recovery?

[Numbsew]

I have now been alternate Day injecting since November 2018. Initially I had great improvement. I was in a good routine, had got well enough to walk the dog a mile a day. I had even done a 2 mile walk a couple of times. Then my go stopped my injections. For 2 weeks I had none, and symptoms returned. I had slurred speech and exhaustion and was beginning to get neuropathy again. then I started self injecting. That was a month ago. Initially I started picking up but then I got a nasty cough and was in bed with a temperature for a few days. That was2 weeks ago. I feel as though my pa symptoms are going backwards. No energy, dragging myself around, short of breath etc. I even fell down the stairs this afternoon. No reason, legs just went. Are relapses like this part of pa? I am concerned that I will never get back to work.

[deniseinmilden]

Hi!

Even without a specific PA diagnosis it is quite possible that your B12 deficiency is PA - or is linked to some sort of autoimmune disorder - and as such you are likely to get remission and relapse phases.

Your body, especially if autoimmune, won't have liked having your jabs stopped and it also will be inclined to rebel if you have an infection that requires it to produce a proper immune response.

However it is also worth considering that the processes of DNA synthesis, nerve function and energy release that use B12 also require lots of other things to make them work properly and many people benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, ideally from your diet. Without enough of everything, nothing will work properly and the repair work the B12 was doing will stop because something else is limiting.

Folate deficiency produces similar symptoms to B12d and often folate is used up once you start regular B12 injections. You could ask to have your levels checked.

Inexpensive supermarket A-Z multivitamin and mineral supplements and folic acid tablets are just as good, if not better, than branded supplements.

If you have any further problems please ask again as there are more options available too!

[Cherylclaire Forum Support]

Did you return to GP to let him/her see what stopping injections does to a B12 deficient person ? Numbsew , it doesn't take much to plummet, but you don't expect your GP to be the cause !

I met a young physiotherapist yesterday by chance and happened to mention that I had had 15 months off work with a vitamin deficiency and I said "Who would believe that want of a vitamin can do so much harm? ", and when I told her what vitamin, she replied "B12 ? But that's everything !"

So your GP has no excuse for not knowing something that is obvious to a recently-qualified physio !

Healing everything takes time and patience: the good thing is that you have proved to yourself that you are able to recover. You were doing really well and will do again. I still get disheartened if I get a "blip", even though I know now that it is a temporary state of affairs. Hard to fathom out what causes it sometimes which is why I still record everything: symptoms - frequency and severity, when I stop taking something: recently halved folic acid supplement to a daily-recommended dose and gradually, hair is falling out and gums bleeding again and a B12 blip - so I know not to do that again for a while !

I am now back at work 2 days a week. It's taken a while, but it's a start.

I followed deniseinmilden 's advice regarding supplementation (tablet form) and it really helped. Although we are all different, she seemed to have similar problems to my own- and has managed her own condition well. She also talks a lot of sense.

Keep trying and don't lose heart.

[Numbsew in reply to Cherylclaire]

Thank you for your encouragement. I did go back to the GP. He said that because the consultant haematologist (who has never met me) said I should not have b12, the GP is not licensed ho give it. (Rubbish). I have told him that I am self injecting, and why. I am seeing a neurologist on Friday so hope he will trump the haematologist and day that I need b12.

I am now having folic acid and Epsom salt baths and am feeling a bit better, although a long way from feeling like myself. Thank you for the advice.

[Cherylclaire Forum Support in reply to Numbsew]

It is a shame when GPs have so little confidence in their own diagnostic abilities that they become a referral system only: once I had been all around the houses and back, I realised that my GP knew far more about B12 deficiency than any of the consultants I had seen (barring a lovely ENT consultant who has clearly seen enough B12 deficient mouths to know one - !). She was "advised" to put me back on a frequency that had already proved in the past to be insufficient for me, which is why I ended up self-injecting. NOT going back there again ! By that time, I think we both felt beaten:

Oh, well - can't say we didn't try !

Let us know how neurology goes - very best of luck.