Neuropathy Flare

[lambuth_eagle]

I have been doing B12 injections for 7 months. Twice a week for 10 weeks. The twice a week has been great and has improved my neuropathy to the point I rarely notice it. Except for the past few days. It seems to be flared up again and I can’t figure out why. Is this “normal” to have random flares?

[jade_s]

Perfectly normal in the early days, and can especially be triggered by things like stress, increasing activity (as we get better, we do more, and then maybe need more b12), more exercise, travelling, illness, etc. Personally I sometimes need more if it's excessively hot out. Have you switched b12 brands recently?

And always worth ruling out heat/light damage to the b12 especially as summer nears.

Also worth (re)checking folate levels as well as D, iron, etc.

Otherwise yes it is normal but just keep an eye on it. You can always add in an extra shot to see if that helps. Hope it gets better soon.

[lambuth_eagle in reply to jade_s]

Thanks for your reply. Very helpful to know this is “normal”. Right before I increased to twice a week I was experiencing what you mentioned…increase in energy and feeling better which meant I was doing more and needing more B12. Increased to twice a week and that has been better but I don’t feel like my activity has changed. I haven’t been sleeping well so maybe the stress of that is triggering a flare. ???

I haven’t changed brands of B12 and I keep my vials in a protective case in a cabinet in our bedroom which stays pretty cool. So I don’t think heat damage.

I haven’t had my folate checked since February so maybe I need to do that. I do take a folate supplement, per my neurologist’s direction.

Checking vitamin d and magnesium this week as I have been given those supplements so I’ll find out soon about those. Also have a hematologist working on ferritin.

[jade_s in reply to lambuth_eagle]

Ah yes - poor sleep! I don't know about others but that *definitely* gives me flareups, even after 6 years.

All the rest sounds good. I read your older posts only after posting, looks like there's a lot going on but you're steadily working on it.

[jade_s in reply to jade_s]

Also note that poor sleep can also be *caused* by low/insufficient B12. Just something to consider, especially if you had that symptom prior to starting injections.

[lambuth_eagle in reply to jade_s]

I never had poor sleep when I was first dealing with symptoms and diagnosis. Not like what I am experiencing now.

It’s like the more B12 I give my body the faster it burns through it. I don’t know if that makes sense but that’s how it feels.

Yes, a lot going on, but thankfully better than I was a year ago when this all started. As my PCP said last summer, “you’ve got a lot on your plate. Like a whole thanksgiving dinner. Let’s see if we can at least get it down to an appetizer and cocktail!” 🤣🤣🤣

[jade_s in reply to lambuth_eagle]

😂 Lol nice analogy!!

I know what you mean by burning through it. 6 months in, I crashed from some bad b12, and had to go 2x daily rather than 1x. My sister's been on 1x daily for 1 year, and recently on days she exercises, feels like she may need 2x. We're both on hydroxy. (Which btw you can get in the US on prescription just fyi, in case you'd want to try it). I don't have any explanation but there are people on here who have been fine on longer intervals who suddenly needed a shorter one. Wish we understood more about the healing process! Anyway I'm just rambling now.

[lambuth_eagle in reply to jade_s]

every day or twice a day...ugh. I self inject and while I can do it and will...I don't love it. I would not be happy having to do so every day, but of course that's better than the alternative.

[jade_s in reply to lambuth_eagle]

Haha true, it can be annoying but yes *much* better than the alternative. It's gotten so routine for me I can do it faster than brushing my teeth.

Are you doing SC or IM? SC is a bit easier.

[deniseinmilden in reply to jade_s]

And low vitamin D (and magnesium - usually goes with bone/joint pain) does this too. 👍

[deniseinmilden in reply to lambuth_eagle]

Well worth getting potassium checked, especially for peripheral neuropathy.

My friend literally lost the ends of some of her toes just with K deficiency, and sore toes and less acute finger tip sensations are my symptom indicator for my potassium levels getting low.

Definitely check folate, vitamin D and magnesium and, if you can, it's also worth checking iron. They are all the main nutrients that go with B12, although everything is important.

[jade_s in reply to deniseinmilden]

Sorry about your friend x

[deniseinmilden in reply to jade_s]

Thank you! What a lovely comment!

She had a significant amount of her bowel removed and this contributed to the problem but having recovered she's able to lead a full and rewarding life which is great!

She did warn me in a timely fashion about the neuropathy in my toes and the potential of low potassium and, having increased my intake, everything improved. When I saw some GI specialists they took account of how much I was taking (beyond what would normally be a lethal amount every day) and suggested I increased my intake still further - and the improvements increased!

This is by no means a recommendation to anyone as it must be taken with great care if not sourced from your diet, as too much is as bad as too little - as you well know.

[jade_s in reply to deniseinmilden]

Poor dear, what an ordeal! Glad that she is doing well. I know both high and low K are bad for the heart but I didn't realize it could be so dangerous in other ways.

[deniseinmilden in reply to jade_s]

Me neither - it's staggering what we learn, isn't it! Thank you for sharing some of your knowledge with us - very much appreciated.

[jade_s in reply to deniseinmilden]

And thank you for yours! I don't know if you remember but way back when, you and wedgewood were the two people who made me feel sane for thinking I needed B12 injections despite "normal" levels and for needing up to 2x day.

[deniseinmilden in reply to jade_s]

Wot? With a B12d memory? 😜😃😃

Yes, I do remember you! It's the daily SI, you know! 😘

It's great when people come back to help. Thank you. x

[jade_s in reply to deniseinmilden]

Hahahaha! I am amazed *I* can remember 😂😂

I try to come by now and then ♥️ Thanks x

[lambuth_eagle in reply to deniseinmilden]

Potassium, vitamin d, and magnesium have been checked recently. All were in the normal range. Potassium was on the higher end of normal. While magnesium and vitamin d were normal my hematologist had me increase vitamin d and my PCP’s has had me increase my magnesium. I’m have those two rechecked today.

[deniseinmilden in reply to lambuth_eagle]

Well done! Your on the right track so far. See how it goes.

Hopefully you'll get to the bottom of it and feel better soon. 👍

[lambuth_eagle]

I do IM. I may try SC at some point but my neurologist wants me to do IM and since he’s great about prescribing it and knowing how to treat it I want to stick with what he says.

[deniseinmilden in reply to lambuth_eagle]

I've done daily SI using 1.5mg in 1ml ampoules for 7 years and always do IM. It's only the outside of the skin that feels it so once you're in it doesn't really matter how long the needle is. 😃

[jade_s in reply to lambuth_eagle]

Fair enough. I'm actually trialling IM myself to see if it helps.