Is this healing or things getting worse? - Pernicious Anaemi...

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Is this healing or things getting worse?

natcap1 profile image
7 Replies

Hello again,

I see from many posts that recovering from B12 deficiency is not a linear process of just getting better. I am certainly experiencing this and am increasingly confused and alarmed by it.

When I started my B12 loading doses I had only just started getting a mild neuropathy in my hands, and interestingly in my mouth. My loading doses were not perfectly administered as I realised I needed them quickly and had a 2 week holiday booked. I had the first week of every other day, went away, came back and had another week. I started on a third week but these loading doses were more spaced out as I felt very agitated after them (I assumed as my B12 levels were getting high). I went on to 2 monthly feeling that my neurological symptoms had been alleviated, but some symptoms returned before the 8 week mark (not the neuropathy). I had the next injection and after this the neuropathy returned, as well as tingling/pins and needles all over my body. This didn't go so I had another injection after 3 weeks. This didn't improve anything, in fact it made me feel agitated again like I had done at the end of my loading doses. Two weeks on from that injection I now feel very anxious, really tired and a bit off balance, with tingling still in hands feet and all over.

I really don't know what to do. I don't think I can stand another dose of B12 yet (was going to wait 4 weeks), but I fear that if I don't my neurological symptoms won't get better. I had been feeling great, despite some tingling, but now I don't even have any energy. Could this just be the healing process or things getting worse? I believe neurological symptoms and anxiety like to hang on for a while, but really this long (it has all in all been 5 months)?

Sorry for the long post. But really I don't know where else to get any help on this. My GP is great but this is also new to her. Any advice or experiences welcome.

7 Replies
jarlethblue profile image

my situation has been very similar to yours...... I felt so so awful after first few loading doses that i really wanted to give up as was frightened how bad i felt....but i decided to continue with every other day if not daily injections and now the anxiety has gone, i have more energy and the neurological symptoms are slowly improving, although worse on some days and improved on seems this whole healing process takes time, sometimes getting worse before it gets better. J

natcap1 profile image
natcap1 in reply to jarlethblue

Thanks for telling me your experience, it is very helpful to hear. I really am finding this difficult. I was ok when things seemed to be getting better, but when it gets worse again it is difficult to rein in the anxiety. I hope that things start to improve again soon.

Nackapan profile image
Nackapan in reply to natcap1

Again I caneed relate to this . On a good day you think right I'm on the road to recovery. Then it gets so confusing when anxiety returns and sy motifs all over the place. What seems to work one day for me doesn't the next. I feel I've achieved something if I've been downstairs to eat or moved around more. I'm very slowly improving. The anxiety csn be deskthe with by thinking of worst symptoms that have passed. It all seems part of this. Before B12 defiency I was not an anxious person infact a very busy carer. I sniff lavender on a hankie if it starts. Breathing exercises csn help. It is difficult. Uses all myour strength to keep a lid on it. I keep a diary too.

I wish you well

Nackapan profile image
Nackapan in reply to jarlethblue

Also I got alot worse after injections started. Dreaded each one with what it would bring. Had side effects bad rash ect. But they did heal and I'm now even though dreading in a way know I need the next one. I'm hoping as a one off rather than loading it wonth be as bad

natcap1 profile image
natcap1 in reply to Nackapan

It is hard isn't it. I find it especially so when I have felt better, and then I get a bit worse again. I'm sure we will all get there, just more slowly than we expected.

blue2323 profile image

I'm dealing with the same thing. It's been 4 months since I started supplementing folate and b12 and vitamin D. Sometimes I feel like I'm really getting better and other days I feel terrible and I'm sure something else is horribly wrong. I still have a lot of the neurological issues but strangely everything seems to stem from inflammation in my neck. I don't know if I have nerve problems there or if I have swollen lymph nodes, but when I press on it it feels like I've been hit in the brain with a cattle prod and I feel extreme Panic immediately like somebody pushed a panic button. Icing my neck several times a day seems to help but lately I've been feeling bad again and now I have strange pains in random places all over my body where it hurts to press. I don't know if this is nerves healing or if something else is going on. My blood levels are at 2000 for B12 so I'm wondering if maybe I'm taking too much? You're not supposed to be able to take too much but when I gave B12 to my kids some of them reacted badly with very high anxiety, and also when I was taking a lot more B12 (10-15k) I know my anxiety was higher. I cut it in half but maybe I need to cut it more . I'm at 5000 a day. I really just want somebody to tell me exactly what's wrong with me and when I will feel better, and what else I need to do to make that happen. But nobody seems to be able to do that. I've been to the GP so many times they're sick of me. But I do have a neurologist appointment on Friday that I'm really holding out hope for. I guess I'm wondering along with you if it's normal to still have all these problems after 4 months. Or if something else is wrong. I hope you feel better and figure it out. It helps me a lot to know that other people are going through the same thing so I guess that's where I was going with this reply. You're not alone. Hang in there.

Nackapan profile image

How are you doing now?

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