newly diagnosed: Hi all, 9 months ago... - Pernicious Anaemi...

Pernicious Anaemia Society

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newly diagnosed

gemmington profile image
9 Replies

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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gemmington
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9 Replies
Secondchance profile image
Secondchance

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!

gemmington profile image
gemmington in reply toSecondchance

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

Sleepybunny profile image
Sleepybunny

Hi,

What treatment are you getting for PA?

gemmington profile image
gemmington in reply toSleepybunny

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

Sleepybunny profile image
Sleepybunny

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.

gemmington profile image
gemmington in reply toSleepybunny

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

Sleepybunny profile image
Sleepybunny

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.

gemmington profile image
gemmington in reply toSleepybunny

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

Secondchance profile image
Secondchance

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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