More B12 or not?

[natcap1]

Hi all,

I haven't posted for a while as I thought I was on the up! However, maintaining good health it seems is always complicated and I wondered whether anyone could help me out with the benefit of their experience with PA.

I was diagnosed with PA last year. I started loading doses in the summer of every other day for three weeks (although there was a 2 week gap between weeks 1 and 2 due to a holiday). I have been on average 6 - 8 week injections since this time. Previous to my diagnosis I did have fatigue, bad moods, a feeling of being off balance, slight memory problems, some tingling (all over) and slight numbness in hands and feet over night. The issue has always been knowing whether the tingling all over (sometimes crawling sometimes like needles) is related to B12 or my life-long panic disorder. I have had bouts of tingling like that once about 20 years ago, and more frequent experiences in the past few years, and they usually resolved. A neurologist I have seen thinks it is anxiety, but has only tested for large fibre neuropathy, not small fibre which this is more likely to be. It was difficult to tell with the loading doses whether the tingling improved because it seemed to get worse with the injections. It has subsided and returned a couple of times over the year, and certainly did not seem to resolve directly after 6 weekly injections or get worse heading towards the next one.

Since this time I have been diagnosed with Hashimoto's thyroiditis. It has damaged my thyroid as it showed in a scan for something else, but my TSH is only just over the range, so I am sub-clinically hypothyroid. This could possibly cause tingling, but I thought the disease would need to be more progressed. My panic disorder has been plaguing me since last year. Now I find myself with tingling all over again, legs, arms, face, mouth, and now some touch hypersensitivity (a bit like hyperesthesia a type of small fibre neuropathy which I have just discovered can be a result of B12 deficiency) to temperature. This is worse than before my diagnosis for PA. I am a few days off my next B12 injections the second of a longer 8 week period. So I am again wondering whether this is B12 or anxiety or both. I don't feel fatigued or have any of the other symptoms I had before (memory problems). In fact apart from the tingling I feel reasonably well. I checked my active B12 level last week out of interest and it was 56.4 pool/L (range 37.5-188) this seems low to me. Should I be maintaining it at a higher level, even near to a next injection?

So I wondered whether anyone has experience this kind of tingling with B12 that is not confined to the hands and feet (peripheral neuropathy)?

If it is caused by a lack of B12 wouldn't the symptoms subside directly after an injection?

Can you have neurological tingling symptoms only with a lack of B12, without fatigue and the other range of symptoms?

If I need more B12 is it better to do some loading doses again, or just to increase the frequency to perhaps once a month?

I really don't want to self inject if possible as I am a bit of a coward, but have considered it previously so have all the stuff.

Sorry for the long post. My GP is reasonably helpful but it is good to hear from people who have PA.

Many thanks.

[Nackapan]

I would try and have your injections at 6 week intervals if that's what you used to do and it kept you symptom free. keep a diary to see if things improve. I've had crawling legs on occasions but have other symptoms too.

I also know the crawling feeling is a common side effect of antidepressants . But if you are not on any medication it can't be that. Hope you resolve it soon

[natcap1 in reply to Nackapan]

Thanks Nackapan. I have been thinking about it and monthly might be better. I might even try a sublingual in between too. I just read about the French lady who ran the London Marathon for PAS takes a high strength one every day with no injections!

[Statesideheather]

I inject every other day and still get tingling if I'm a few hours late. It took quite some time to get to feeling this good. Tingling and vibrations all over I had. Even restless arms.

Anxiety and panic happen with low B12 also. I definitely feel them creep in if I don't inject as often. Before treatment I was in a seemingly permanent state of paranoid panic. If I'm getting enough B12 I feel chill and relaxed.

[natcap1 in reply to Statesideheather]

Chill and relaxed sounds like something I haven’t been for a long time! I don’t expect miracles but it’s got to be better than this. I don’t really want to have to inject every other day if possible as it’s just the logistics and expense of it really. But if that’s the only way to feel ok I guess I’ll have too. Thanks.

[Statesideheather in reply to Statesideheather]

I understand completely. Once I had worked up to once a week clinic injections, I spent months pinning down when my symptoms were kicking in. At once weekly, I still relied heavily on oral B12 after a few days. And still was feeling in need of more. I finally caved and ordered injectable from Canada (I'm in the US) and started once weekly...moving to once every three days and finally every other day. It has been months since I've needed any oral B12 I feel the best I've felt in years. A few months back I decided to wait a few days and went 4 days between injections. I was in bad shape. It is sneaky so you don't notice it so much at the time. But that injection after 4 days, my hands barely worked and I had been in a near constant state of panic for a day and a half.

After some time doing the every other day I may try adding a day in between. But for now, it is clear that my body processes and gets rid of B12 pretty quickly so injecting every other day is as close to normal I think as I can get.

I'm not a Dr and I cannot give medical advice. But, for me, after working up to where I'm at now, I can say assuredly that B12 enters and leaves my body within 48 hours. I can't imagine that I'm all that unique. So if you can find a way, maybe try injecting more frequently. It can happen in a short time that I go from chill, relaxed and normal to tense, paranoid and panicked. But it does not happen at all when I'm injecting every other day. ❤

[natcap1 in reply to Statesideheather]

Thanks for this, it is really really helpful. I’m very worried my symptoms won’t go away so am willing to try anything now! I’ve arranged to do my first SI with the nurse next week and am going to start weekly injections and see how that works. Like you I’ll be upping from there if need be. Anything to feel better than this! You certainly don’t appear to be unique on this forum with your frequency.

Thanks again for telling me about your experience. This is such a valuable resource. This disease can be so isolating. Even though my father has PA he seems fine on 3 monthly injections, which made me wonder what was wrong with me! But from this forum I see for how many the basic guidelines don’t apply.

[Ritchie1268]

Hi natcap1

I was also diagnosed with PA last year.

My tingling fingers & burning feet actually got worse after treatment started, to the point where my feet now hurt when walking, as if having glass or pebbles in my trainers.

After seeing a neurologist, I now know its small fibre Neuropathy. I too wondered why it got worse after I started self Injecting every other day since Xmas.

Almost all other symptoms though have now gone.

I was lucky to see a great Neurologist who said that hopefully, keeping up with my self Injecting regime, in time, may heal the damaged nerves in my feet?

I'm still learning all about the rollercoaster ride that is PA & have learned more about it from the amazing people on here & Martyn Hooper's books than from anywhere.

You will get some great advise from more experienced people than me on here.

Good luck

[natcap1 in reply to Ritchie1268]

Thanks that’s interesting and I am glad that most of your symptoms have improved. They have for me too, just this awful tingling is driving me nuts. Anything slightly cold feels really cold. I have my injection tomorrow and I’m going to up the frequency one way or another. How long will you inject every other day? Do you ever have side effects of the B12? If I had accumulated quite high levels it started to make me feel odd.

[Alfabeta in reply to natcap1]

I don’t self inject. If I did, I would probably have less symptoms but there’s no guarantee - some people on here inject constantly just to cope. Given what I’ve been through the pins and needles are simply an irritation. I just wish I knew whether I am coming to the end of this awful condition or whether, as I said, I’m just entering another room.

The only side effect of b12 that I know if is headaches and this depends on which b12 one takes.

[Ritchie1268 in reply to Alfabeta]

Your explanation of "just entering another room" is a really great way of putting it! This is why we all feel like hypocondriacs!

My tingling fingers & burning feet were, as you said, just an irritation that I became used too, now the painful burning feet are more than that.

Having said that, I'm feeling the best I have in years now, but, I am also fully aware that on this Rollercoaster ride we're all on, that I'm always just waiting for that door into the "next room" to open wide & welcome me in 🙄

[Ritchie1268 in reply to natcap1]

You're welcome & thank you.

The only tingling I had was fingers & feet, till my feet eventually started hurting & still do when walking.

I used to get a sore swollen tongue & on a few occasions woke up & the back of my throat was swollen making me heave, as if there was something stuck in my throat. I had my tonsils removed many years ago so I knew it wasn't that. I call it for want of a better word, the "clacker thingy" 😁 but this hasn't happened for a very long time now.

If I don't self inject every other day, I get irritated over the simplest things that wouldn't normally bother me.

I will keep Injecting every other day in the hope that the nerves will eventually heal in my feet.

And no, I don't get any side effects at all from Injections of B12.

Good luck 👍

[natcap1 in reply to Ritchie1268]

Thanks for sharing your experience. This isn’t much fun is it! I’m sure we will find things improve slowly.

[Alfabeta]

Hi

I just looked up small fibre neuropathy - causes listed cover a multitude of conditions including b12 deficiency. I told the nurse about my pins and needles and she immediately asked me about my alcohol consumption even though I was with her for my regular b12 injection.

What hope is there for those of us with b12 deficiency if medical professionals go for anything on the list but b12 deficiency?

I was diagnosed b12 deficient over four years ago. I had a range of symptoms- blurred vision, exhaustion, tinnitus , auditory hallucinations, balance problems, memory issues. Many of the symptoms went once the treatment started - the tinnitus took about 18 months to desist and the auditory hallucinations about 2 years.

I was left with bouts of semi consciousness which came and went after about 10 seconds.

The lasting symptoms would occur about six weeks after injections hence, I assume, they related to the b12 from the injection dissipating.

I am in week 6 of my last injection and, so far, I have not had any of the ususl symptoms.

However, the small fibre neuropathy has only started in the last year and keeps coming and going.

Foolishly, I assumed that I was possibly getting over my condition but b12 just seems to be a series of doors through which one goes and, in each new room, one is greeted with new symptoms whilst the door is being closed on others.

I don’t think I have PA as my symptoms do not mirror the majority of experiences described on here. I assume my myelin sheath has been damaged and the changes in my condition over time has been due to its gradual repair. At least that’s what I hope is happening.

Good luck with your condition.

[natcap1 in reply to Alfabeta]

Thanks Alfabeta. You are right. I see that just getting treated does not mean the end of the symptoms. I just can’t get used to the way they turn up and go then turn up again in a slightly different form. It is confusing and sometimes distressing. I just hate there being no certainty in how one can get to recovery. I do thankfully have a good GP but even she now is not seeing these symptoms in the context of PA.

I will keep pushing on for solutions. I hope you get some too.