Finally diagnosed with pernicious anaemia

[janetmenzies]

After a year long struggle, I finally have my pernicious anaemia diagnosis and have begun treatment. But I'm not finding any improvement so far. The other thing that has really shocked me is the poor reaction among friends and the public who have no idea how serious the disease can be and couldn't care less. If only there were the same awareness as cancer.

[LtAngua52]

What treatment are you having, injections? What form of b12 is it? How long have you been suffering the symptoms? How long have you been having treatment? All the answers to these questions may determine how successful treatment will be. Glad you have finally been diagnosed and receiving treatment, even though, as usual, it took a long time.

[janetmenzies in reply to LtAngua52]

I'm having injections every other day and have just finished the first week. It is hydroxocobalamin. I have been suffering the symptoms for about a year to 18 months. I think one of my problems is that the relief of being diagnosed put me on a high, which has now dissolved with my symptoms not yet improving.

Thank you so much for your reply.

[LtAngua52 in reply to janetmenzies]

It can take a long time to feel better, or to get the best you are going to get. Some people feel better using methylcobalamin, some hydroxocobalamin, or cyanocobalamin or adenosylcobalamin. You need to give it time before you consider changing the form. Some people feel worse on treatment before feeling better as the body is adjusting. I started to feel more pain as some of the nerves were starting to heal. Obviously, the longer you have been without treatment the longer it may take before you feel improvement. If you have neurological symptoms they may not all go as you can have a degree of permanent damage. I do, but I was ill for about 15 years before treatment.

Even though I self inject, I still use a few of the sublingual lozenges. I do agree that you do get a high when diagnosed because you feel vindicated. Especially with those doctors who may have suggested it was in your head. I was sick of hearing that and prescribed antidepressants. I was not clinically depressed! I hope you start to feel better soon. You may want to keep a log of symptoms as you progress, sometimes the improvement might be so small that you don't notice them. You do realise that treatment is for life?

I wish you luck.

[fbirder]

I think we should stop calling it PA and use a synonym - how about Deadly Anaemia?

[Gambit62 Administrator in reply to fbirder]

only works if you have anaemia and I have never shown signs despite being able to trace neuropsychiatric and neuro symptoms back over 40 years.

However, definitely does need a different name. I usually talk about a problem absorbing a vital vitamin - B12 - but then again I don't really know what the cause is and it could be PA or it could be some other absorption problem.

[janetmenzies in reply to Gambit62]

It is an "invisible" illness. I think one of my problems is that all my friends have always seen me as a super-busy, super-efficient person. I walked 250kms across the Sinai desert last autumn. In retrospect I realise I was already suffering with PA at the time! My day job is as a writer, so maybe I can come up with some modern names!! Good luck to everyone in the quest for health.

[clivealive Forum Support in reply to fbirder]

Or "The silent killer" fbirder

google.co.uk/url?sa=t&rct=j...

[helvella in reply to fbirder]

Only needs that for people, including medics, who don't know the meaning of "pernicious"!

pernicious

[per-nish-uh s]

See more synonyms on Thesaurus.com

adjective

1. causing insidious harm or ruin; ruinous; injurious; hurtful:

pernicious teachings; a pernicious lie.

2. deadly; fatal:

a pernicious disease.

[wedgewood]

I love your pincushion! Glad to see that you have retained your sense of humour !

You have to make sure that you have plenty of folate as B 12 works together with B9 ( folate ) I actually take a vitamin B complex ( huge choice on Amazon) Also play great attention to a good diet . Depending on how long you have been deficient , it may take sometime to completely recover . Don't be impatient .I have not recovered 100%,but I can live with that .

There is huge ignorance in the medical profession about PA. The pharmaceutical industry is not interested , as B12 is a natural substance and cannot be patented--i.e. No big bucks to be made . Marty Hooper is doing a marvellous job for us . He is putting our case very cleverly and eloquently .

The general public is therefore also ignorant . But you have US.!!! Please let us know how you get on . We will support you . You have now been diagnosed which is so wonderful . We look forward to hearing from you Best wishes

[wedgewood]

Just thought Why not take a vitamin D +K tablet too? It's in the news at the moment .

[janetmenzies in reply to wedgewood]

Thank you so much for your helpful replies. I agree about the wider supplements and have found a vit k plus doing b complex. It's great too to understand it's not just me! Good luck to you all

[clivealive Forum Support]

janetmenzies It really is "early days" on your "road to recovery" and many will say that things seem to get worse before they get better as the healing process progresses and you have more than a "year's worth of damage" to start repairing.

But be assured there is life after P.A.

When I was diagnosed in 1972 (13 years after gastric surgery remove two thirds of my stomach so I was already well on the way to B12 deficiency) I was "threatened" with a diet of raw liver three times a day. Fortunately I was given the option of cyanocobalamin 1000mcg every four weeks, which I took - and here I am, still "clivealive" at 75.

I spent nearly 40 years in total ignorance of what P.A. was all about. I didn't know anyone else who had it, a succession of nurses and doctors never enquired how I was feeling or coping with the injections and whilst my employer was very good in letting me have "time off" every fourth Tuesday at 10.30am my colleagues must have wondered where I kept disappearing to and why.

Sadly most GPs follow the "one size fits all" mindset where B12 injections are concerned and I hit this brick wall with my own doctor six years ago when I noticed the increase in neuropathy in the run up to my next injection. "It can't be the P.A." he said "because you are getting the injections" and laughingly told me it was "all in the mind".

I then found and joined the Pernicious Anaemia Society and "discovered" that I was not the only person in the whole world who suffered similarly. I have now "renegotiated" the frequency of my injections.

If only PASoc and this forum had existed four decades ago.... but they are here now thank goodness.

[Gambit62 Administrator]

If I had to go for another name it would 'the living death'. Having suffered from over 40 years of depression and anxiety - to the extent that I really didn't want to be alive and was just going on with existence because the thought of causing pain to those that were fond of me by ending it all ... and not being able to think of a way that wouldn't mean somebody had to find the body.

To be honest I was ill for so long and it was sooo much worse in the couple of years before I started treating myself - including the time after diagnosis - most of those that know me are as amazed as I am by just how much a vitamin can affect you.

[janetmenzies in reply to Gambit62]

Thank you so much for your reply. It really helps to share what we are all going through, and I really hope your symptoms are easing slightly. At present I am certainly feeling the anxiety and depression you mention. My main symptom is absolutely crushing exhaustion of a type really hard to explain to those who haven't suffered it. I seems from the PA community though that sufferers like yourself are very brave to cope on a daily basis with the mental effects. Good luck with everything.

[123harry]

please try and be patient as everyone else is saying think how long your body has been depleted of this vitamin it will take a long time to build a good level back up again, it took 4 months for me to start to feel better iv been so tired this weekend though so be prepared for bad days as well its not a miracle cure its ongoing and because nobodies heard of this they just shrug it off, start talking about vitamins in a conversation and people think your some kind of health freak and would rather talk about the weather l must admit l used to be like that but have been amazed how these little tablets can make you feel so much better great pin cushion love it!

[janetmenzies in reply to 123harry]

I'm nearing the end of the loading course now, and providing I get plenty of sleep, I'm feeling less tired and more positive. I think the PA tiredness is a particular kind of exhaustion which as a journalist I'm going to write about as soon as I'm ready. I agree, people do not want to step outside their bubble and be forced to think about difficult stuff until it actually happens to them. That's why forums like these are so very helpful.

Thanks for your reply, and good luck with your continued recovery. (I liked the expression on the pincushion's face!!)

[Hillwoman]

Re. a name change: how about just calling it Pernicious B12 Deficiency? That would cover the different origins of the problem in different people.