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B12 injection

Alfabeta profile image
7 Replies

Hi All

Question:

Is there an obvious reason why one might get a surge in ones signature symptoms after ones has had an injection?

I was diagnosed b12 deficient over four years ago and have the multi-various symptoms related to damage to the myelin sheath rather than pa.

I have noticed on numerous injection cycles that my symptoms have returned after the injection, sometimes on the same day.

I have just had a 2 injection cycle - 12 weeks followed by 8 weeks when my signature symptoms ceased virtually altogether with the exception of small fibre neuropathy (I think this is the correct medical term for all over body tingling which is not quite the same as pins and needles - is it the right medical term?)

I have just finished my new injection regime having virtually ordered my doctor to follow the ‘directive’ as opposed to the previous ‘advice’ that patients with neurological symptoms should be injected every 8 weeks.

I had my first post 8 weekly injection on Friday and, in the previous 12 week cycles my signature symptoms would usually appear between week 6/7.

I take a daily multivitamin and a daily 200mg b12 tablet which I increase to 3/4 times when symptoms reappear.

I was using sublingual b12 spray but it was adamantly stated on numerous occasions on here that there was overwhelming evidence that it was pointless .

Having had two cycles when my signature symptoms ceased and having put behind me a whole range of other symptoms which ceased and have never recurred during the four years + since my initial diagnosis, I rather prematurely thought that I might be just seeing light at the end of the tunnel.

Is there a reason why a massive burst of b12 would create a surge of symptoms?

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Alfabeta profile image
Alfabeta
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7 Replies
Nackapan profile image
Nackapan

So if you are on 8 weekly b12 In jections now . Do you think the b12 could be simply doing more repair causing you more symptoms until your body settles with the new regime. ?

It's very difficult to fathom at times . It may well calm down and you will never know how or why. I hope so.

Alfabeta profile image
Alfabeta in reply toNackapan

Thank you for your support. It’s a lonely place in the medical world this b12 deficiency!

My main concern is my peculiar symptom as I have yet to find anyone who is affected in the same way.

My main consolation is, that over the four years, my symptoms have become less in number and frequency and the fact that ‘I’m still standing’!

Good luck and thank you again.

Nackapan profile image
Nackapan in reply toAlfabeta

Yes it is a lonely place . Many theories but too few solutions. Take care too.

Nackapan profile image
Nackapan in reply toAlfabeta

What peculiar symptom do you mean

Alfabeta profile image
Alfabeta in reply toNackapan

My signature symptom which persisted after all the others vanished in the ether was a sequence of events:

1 out of the blue I would go into a trance like state

2 loud tinnitus would occur like interference on a radio

3 auditory hallucinations like listening to voices in a crowd which seemed to make sense whilst occurring then no sense afterwards

4 the episodes would last between 5/10 seconds.

They have always come in sequences usually around midway between injections.

7/8 times on the first day then diminishing over a 6/7 day period then nothing.

Occasionally they occur on or soon after my injection.

1 has persisted. 2 ceased after about 18 months. 3 rarely occurs now and, if it does it’s more like a short dream sequence.

Afterwards I am in a mild state of shock for about 3/5 minutes.

Weird eh!

Nackapan profile image
Nackapan in reply toAlfabeta

The first one I can related to. I wasn't really aware I did it but I've been told 'I'm not in' and staring at the wardrobe. Not for long and not on any medictation!

I used to get loud bursts of noise in my head which I expect is tinnitis

Thankfully it's reduced to a lower frequency most of the time now and I'm more aware when it happens. Whereas before I suddenly was aware my head was quiet.

3. I've not had

As I've had a real struggle convincing Gp I'm not depressed which she now at last realises and has stopped trying to get me on antidepressants. I can now acknowledge some of these things. She has looked at me blankly too many times when I describe symptoms. The neuroogist did give some reasons. One was my skull cramping and neck on and off all the time which is upsetting the nerves. The state of shock sounds horrible. So glad it's decreased .

Alfabeta profile image
Alfabeta in reply toNackapan

Thanks for your response. My symptoms are weird and I’m lucky because I spoke to a neurologist who tried to take me down the mentally ill route and I was made aware of how people with my symptoms have been designated as mentally ill - I was forecwarned and I haven’t mentioned my symptoms to a doctor since.

The b12 site which is essentially run by an aged Indian doctor and saintly woman has all of my symptoms listed but this is a site for PA. My experience is that gp’s and medical staff generally immediately put one in the PA group - they seem to disregard or are ignorant of the other outcome of b12 deficiency which is damage to the myelin sheath which can result in a vast list of symptoms.

I spoke on the phone to the b12 doctor - a wonderful human being- who simply pointed out that I was obviously responding to treatment as symptoms had either ceased whilst others had reduced and that is how I see it - I am getting better but might not ever be cured. This puts me in a far better position than many of the people on here who have PA - many of whom suffer greatly and will always suffer.

There but for the grace of god go I- so to speak.

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