Confused about adverse reactions

[Whatdayisit]

I don't understand why people are having adverse reactions when getting B12 injections. I get them monthly now that my level is up from 119 to 526. I feed completely recharged afterwards.

[Nackapan]

That's good.

We all are different with different healing taking place.

If caught early maintenance b12 injections s should do just as you describe

Reality is its a rockier road for some.

Never on numbers but on Symptoms

Keep well

[Bonjourtristesse in reply to Nackapan]

Nackapan I thought of you the other day. I’ve been using Curable the app and saw something about vestibular migraines on it. It’s basically education about chronic pain and the connection to our emotions and has been successful for a lot of people when nothing else has worked. I also used when I had an endless migraine.

[Nackapan in reply to Bonjourtristesse]

Oh okay . Thank you. Will look into anything .

The last neurologist said its going on all of the time .

Even if in a different form thsn acute like at the beginning.

It's that tine if yrsr agsin when lighting is needed . I just about cooe with 25 Watts now .

Thats an improvement a used to feel like I was under attack .

Still driving me yo ho with 'nature ' up at dawn . retire at dusk.

The neuro Opthalmologist could only add the brain is complex!

I was hoping for more .

[Bonjourtristesse in reply to Nackapan]

Wow that’s unhelpful. I’m glad you’re still improving. I think it’s also nice to hear other hopeful stories and a bit improvements. When you’re the only person you know dealing with it everything can seem rather dark.

[wedgewood]

Yes , one of the problems with having P.A. is that we are all different ,and another is that there needs to be a lot more research into this condition.

Some people do better on different B12 preparations . — There’s Cynocobalamin, Hydroxocobalamin and Methylcobalamin available to use . For instance a member clivealive doesn’t suit Hydroxocobalamin, so uses Cynocobalamin injections .

Some patients can absorb a certain amount from high dosage tablets . I can’t — I really persevered , but no success .

Some patients feel worse before they feel better ( I didn’t , I felt great after a couple of injections . ) Patients need anything from a daily injection to 3monthly .to keep well.

Could be to do with how long a patient has had P.A. It can go undetected for years , before being diagnosed . The sooner the better obviously .

Patients with adverse reactions to Hydroxocobalamin ( which is what the NHS uses ) might do better on Cynocobalamin. Who knows ? Doctors are frighteningly ignorant about P.A. / B12 deficiency .Most do not seem to read the latest guide lines on the subject , or do not adhere to them .

So we have to struggle on ,and help ourselves . And try various solutions by trial and error. But this forum is the best place to come to , no doubt about that . Without this forum I believe that I would have declined so much by now , that I would have to be in a care home .

Sorry I’ve not answered your question , ( because I don’t know any answers ) but drifted off to say something else I wanted to say ( how like a politician !)

Pleased that the injections have worked well for you . It’s always great to hear of a good outcome . Best wishes .

P.S.We need a Bill Gates to donate several millions to do research into P.A. /B12 deficiency.

[Showgem]

My symptoms were severe and my b12 level was extremely low, less than half of your low level. I couldn't feel it if I stood in a bath of scalding water or put my hands in really hot water or picked up hot dishes from the oven because of neuropathy. I couldn't balance or walk without support and would drag my feet. When nerves started "waking up" it was painful and all sorts of uncomfortable and frightening symptoms started to emerge. Some symptoms were quickly resolved such as glossitis but others felt much, much worse for some time. Not all of my symptoms have gone and it's been over two and a half years now. I have never felt "recharged " after an injection but if I leave it too long between injections my symptoms start to come back.

I am very pleased for you that you have had such a great outcome but many of us never have such good results and no one seems to know why that is. It's probably because of such long standing damage done before we are diagnosed and then not receiving enough b12 to correct it at the start of treatment. This is why more research needs to be done, for medical professionals to be aware of the need for b12 levels to be routinely tested when doing blood tests and the importance of following guidelines instead of believing "one size fits all".

Here in the UK the general belief seems to be that after the first couple of weeks you will only really need to receive a b12 injection every 3 months once your b12 level is high enough. Some seem to manage fairly well on this regime but for many of us that might be enough to just keep us alive but not help us to fully recover and to live our lives as well as we could.

Hope this helps you better understand the problems some people have and that you continue to keep in good health.

[wedgewood]

Great reply Whatdayisit . 👍👍👍💐