Symptoms getting worse: I was diagnosed... - Pernicious Anaemi...

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Symptoms getting worse

Alfabeta profile image

I was diagnosed as b12 deficient around a year ago, had the six injection then another injection every 12 weeks. I have neurological symptoms but the doctor refuses 8 weekly injections.

I had a range of symptoms to begin with but most of them stopped fairly quickly once the injections stated.

My recurring symptom is a sudden trance like state - I am still conscious but it is as if I become distant from my surroundings - I then hear a babel of voices which it has been explained to me is actually tinnitus- this lasts for what seems about 5/10 seconds then I am overcome by a sense of euphoria. I then recover.

This tends to have three or four times in a day then I have several weeks with no symptoms.

As the treatment has progressed I usually only get the beginning of the above then the event cuts off before the tinnitus begins - this is not always the case but mostly.

I nearly always get an attack soon after my injection then I am okay for about 6/7 weeks then I get further attacks.

This month, however I have started having multiple attacks - not the full attack just the starting up of the process which sometimes leads to the tinnitus- I am left feeling a little unsteady on my feet and a bit twitchy around my body.

I have started taking a 1000 mu b12 tablet a day, a multi b vitamin which I thought my go some way to stopping the attacks but things have got worse - at least they have this month.

I am a vegetarian and verging on vegan although I have been putting cheese back into my diet to get at least some natural source of b12 otherwise I just have Alpro yoghurt and milk.

My doctor is not sympathetic and says that my symptoms are not b12 deficiency symptoms but he's wrong - they are!

Any help would be gratefully received - apart from becoming an eater of meat again which will not happen.

Thanks

8 Replies
clivealive profile image
clivealiveForum Support

Hi Alfabeta I guess that being vegetarian/vegan you eat plenty of vegetables but are they the ones high in Folate?

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, orange juice, avocado, and milk. In addition,some breakfast cereal products are now fortified with folic acid in the UK.

Alfabeta profile image
Alfabeta in reply to clivealive

Thank you, Clive. I think I do get enough folic acid as I eat not all but most of the veg you list plus cereal with b12.

clivealive profile image
clivealiveForum Support in reply to Alfabeta

Hopefully then, assuming you don't have an absorption problem with your stomach, you shouldn't need to supplement with folic acid.

Your comment about things getting worse after "taking a 1000 mu b12 tablet a day" makes me wonder if it's a sign that the B12 is actually at work repairing some of the long term damage done to your nerves caused by the original deficiency. All of a sudden your brain becomes inundated with signals from places it had previously "forgotten". You may have experienced this when you had the original loading doses and the fact that symptoms are returning prior to the next 12 week injection suggests that there is more "work" needing to be done and your supplement may have "triggered" that.

I'm not a medically trained person just someone who's had P.A. for more than 45 years and lived through the peaks and troughs of inadequate treatment.

I wish you well

Alfabeta profile image
Alfabeta in reply to clivealive

Thank you Clive. The only problem with 'the repairing' issue is that I read on this forum and the b12 forum of people having a virtual lifetime supplementing b12. However, reading the forums simply tells me that there are people far worse off. Your own circumstances humble me given what I have read about your life long problems. A problem shared is a problem halved - that is so true of this forum.

clivealive profile image
clivealiveForum Support in reply to Alfabeta

I was faced with the prospect of eating raw liver three times a day or lifelong injections. Guess what? I chose the injections :)

Eating meat isn't likely to give you more B12 than you are getting with the tablets.

If your doctor is correct that it's not down to B12 (and I can see why they might think that) what do they think is causing it? Have they referred you to a neurologist?

What you describe sounds like it might be absence seizures, which can have many causes and many fixes. But you would need a diagnosis from a neurologist after an EEG and other tests.

Alfabeta profile image
Alfabeta in reply to fbirder

Thank you for your response. I was thinking exactly that. I did tell my doctor about my symptoms and spoke to a doctor on the Benenden help line. I was told that auditory hallucinations are not a symptom of b12 deficiency and frankly what faith can one have with a doctor who is ignorant of the symptoms of b12?

I recently had an MRI scan for a head injury but no abnormality was found.

Another problem that I have with going to the doctor or any medical person including the nurses that give me the injections is either their ignorance of the condition or their assumption that one is a hypochondriac!

That's my experience anyway.

Hi I'm new to all this too but a few helpful people have said about trying to up other vitamins too . I have to take folic acid as prescribed but also have got berocca tablet in morning too . Have just had loading injections and until yesterday thought doctor was trying to kill me . This is my second good day in a row . Although about once a day get a sharp pain in my ear which passes within a few seconds and sweating in the morning.

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