Pernicious Anaemia Society

newly diagnosed

Hi all,

9 months ago I was diagnosed with pernicious anaemia, today I was also diagnosed with Fibro and Chronic pain.... feeling really low and not really got a clue where I am going or what I am doing, so I have joined a couple groups here to try and get some info on all 3 and change my life.

Have been arguing with Dr's for 5 years to get to this diagnosis, and although I am really happy to finally have some answers, I am also pretty upset I got into such a debilitated state before getting help.

Sorry for the negative post, bit all over the show! - Looking forward to getting to know you all and getting some fab words of wisdom.

Gem

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Hi

If you read this forum you will soon discover that many people have difficulty getting a diagnosis of pernicious anaemia and/or B12 deficiency and then have difficulty getting treated adequately. What treatment are you getting? Many of the symptoms overlap with fibromyalgia. It may well be that the standard 3 monthly treatment is not enough for you. Look at the survey on here about how often people feel they need their injections- not many say 3 monthly! I know I couldn't survive on that. Well, I might live but it wouldn't be much of a life!

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Hi,

I had my initial booster as my original reading was 168.... Then.I went 12 weekly until I had another 2 week alternative day treatment in January, but my reading after that was 1200 im due another blood test soon to check levels.... But yes, I found 8 weeks was my max and then I would be feeling awful again

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Hi,

What treatment are you getting for PA?

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Hi, I have b12 injection every 12 weeks, and I have had 2 lots of booster treatments since diagnosis

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Hi,

If you have neuro symptoms you should have received an injection every two days until you stopped improving then an injection every two months.

Have a look at this symptoms list.

pernicious-anaemia-society....

Your GP should have a copy of the BNF(British National Formulary. If they look at Chapter 9 section 1.2 they will find the info.

You might find it helpful to google "BCSH cobalamin and Folate guidelines". Have a look at the diagnosis flowchart on I think page 29.

If you contact your local CCG (Clinical Commisioning Group) they should be able to tell you if your area is following the BCSH guidelines.

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Im.Sorry, none of that made sense :-( what are neuro symptoms? I have so many symptoms it's hard to separate out x

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Hi,

The following would probably count as neuro symptoms;

dizziness, feeling faint, pins and needles, tingling, tinnitus (noises in your ear), clumsiness eg bumping into things, poor balance, memory problems, confusion, forgetting names of things etc.

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Yeah I do get those, but could also be the fibro :-(

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Yes but fibromyalgia is of unknown cause as far as I know and there is not much in the way of treatment that is available/works. B12 deficiency is treatable and high levels are not dangerous so it is worthwhile pursuing it to see if you can get alternate day treatment and if that makes a difference. It took about 8 weeks of alternate day treatment for most of my neurological symptoms to settle and I was not as bad as many on here seem to have been. I also took loads of sublingual supplements, methylfolate and B complex to maximise my use of B12.

Guidelines recommend treating as per symptoms not blood results.

Good luck!

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