One of the most controversial aspects of Pernicious Anaemia is why patients are still symptomatic with the worst effects of the disease even though their anaemia – that is their lack of healthy red blood cells – will have been treated (if not cured). In the same way it has not been explained why some people have very low levels of B12 and very poor red blood cells and yet have none of the symptoms associated with B12 deficiency whether that deficiency has been caused by Pernicious Anaemia or not.
I inject 1ml of highly concentrated B12 in the form of Methylcobalamin every other day 5mg/ml (various other concentrations are available up to 20mg/ml) which I source from a respectable doctor. Ever since I had an intravenous infusion of Methylcobalamin the ‘fog’ days that I used to experience have disappeared. I still get very tired in the afternoons but I haven’t had any of those days where you can’t think right and everything is clouded with nothing being clear.
I’ve been doing well on my treatment regime and manage my day to day life quite well. But for the first three days of this week (Sunday to Tuesday) I experienced the worst effects of the symptoms of B12 deficiency to a degree that made performing normal activities impossible. Those three days served as a reminder that even though my treatment is usually effective in staving off the worst effects of Pernicious Anaemia there are still going to be those days where I will not be able to operate any kind of normal service.
The symptoms that I experienced earlier this week include:
Talking Nonsense, Asking the same question over and over, Confusion, Clumsiness, Memory Loss, Doing strange things (like putting my watch in the freezer – and yes it still works), Cognitive impairment – couldn’t concentrate on any television or radio programmes – it just didn’t ‘go in’, Sighing almost constantly, Desiring Isolation and complete calm, Irritability – real irritability and mood swings over the slightest and tiny problem and a whole host of other strange experiences that to be honest I cannot remember.
How did I deal with this? I didn’t. All I could do was hope that things would improve soon. And this is another aspect of having ‘bad days’ that is not widely known or discussed is the sense of panic and of fear that the patient feels when experiencing these ‘bad days’. The panic and anxiety lies in the uncertainty that things will improve even though based on past experiences normality will return in a few days. I don’t mention my anxiety that things may not get better because, well, who would listen – but it is always there at the back of my mind when I am in the middle of a bad few days.
Anyway, yesterday the fog went away and things were clearer again. And that’s why I am able to sit here and write this – for three days this week it would have been impossible.
dear broter i m sufferer of pa and i m having the same problem i even feel very tired afternoon but i m still hopefull things will improve so be positive and take care and reply to me
Martyn,
Thanks for sharing. Glad I am not alone.
“Those three days served as a reminder that even though my treatment is usually effective in staving off the worst effects of Pernicious Anaemia there are still going to be those days where I will not be able to operate any kind of normal service.”
Martyn,
I know you have used methyl right from the beginning but I’ve often wondered if you would do better on hydroxo. It has been discovered on the forum that quite a few people either started with methyl or supplemented with it in addition to their officially given hydroxo. It may have started out well for them only for their condition to deteriorate again. Indeed, the same happened to me. Once I cut out the methyl subs, I improved again.
I don’t feel that you should be having tiredness in the afternoons and I still wonder if methyl is the right form for you. There are those for whom methyl is the only form which works but these people know this because they have tried hydroxo whereas, to the best of my knowledge, you haven’t. Do you think it worth trying hydroxo on its own for a few weeks to see what effect it has?
I can honestly say that, in over four years of thrice-weekly hydroxo jabs, I’ve never suffered the type of crash that you describe above, unless I had tried to reduce my injections or folic acid.
Maybe it’s time to give hydroxo a trial.
Can I have some guidance on where to obtain the injections?
Victoria – see here: http://www.pernicious-anaemia-society.org/phpbb/viewtopic.php?f=2&t=11531&start=150
Sorry – should have been this: http://www.pernicious-anaemia-society.org/phpbb/viewtopic.php?f=2&t=11531&start=164
These symptoms describe my every day hell.. the constant irritability and depression seem to take over any good things in my life and I constantly need things to look forward to just to get me through the day.. my docs are useless and being sent to a haemotologist at the end of September. I hope for day symptom free x