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I was diagnosed with pernicious anaemia 12 months ago af...

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I was diagnosed with pernicious anaemia 12 months ago after years of experiencing exhaustion, palpitations, dizziness, confusion, memory loss and back pain.

I had an initial course of 6 B12 injections over 2 weeks and now get an injection every 12 weeks.

I have had very little improvement in my condition even though my B12 levels are now in the normal range.

I was diagnosed at age 39 but believe I have had the condition for at lease the previous six years.

My GP expected an improvement after the first injection, then the sixth and finally he told me it could take six months to a year.

My mother also has the condition and was diagnosed in her late twenties. She finds the injections give her a marvellous boost for about eight weeks and by the time she reaches the twelfth week she is thoroughly exhausted again.

I feel no difference at all when I get an injection and do not know where to turn to for help. I feel my children have had at best half a mother for the past 7 years and am frustrated at the lack of help or understanding from both the GP who diagnosed the problem and my previous GP who failed to detect it in the preceding six years.

There seems to be no help available for the people who do not respond to treatment.

[i:3178d25953]This message was automatically imported from the original Patient Experience[/i:3178d25953]

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  • Guest
    Guest

    Posted

    Response to the mum with pernicious anaemia diagnosed 12 months ago. I spent my young years suffering with acute exaustion, and all of the symptoms described & more..I had two small children & a part time job as receptionist for a doctor -my own GP! It was failed to be diagnosed for many years,the doctor blamed my diet, I am vegan. I could park my car then fall asleep at the wheel! After going out for a meal with a nurse and looking very ill she told me to go to hospital immediately, pay private and go quickly. It proved to be P Anaemia and I was very ill. Nothing to do with my diet!!

    But..after being told it would take a minimum of 18 months before my blood count would return to normal and being devastated to find it would take two years before I felt well again, I am happy to say once it settled my life has changed beyond belief.

    I have B12 injections every 10/12 weeks, I am tired,my ankles hurt badly, worse when in bed at night & my eyes feel sore and my skin feels 'drawn' when I need the injection. After a few days I am 'awake' again and comfortable, full of energy. BUT..every couple of months for some reason I do not get the same 'lift' I just feel a bit weary until the next injection. Then I feel brilliant again. After years & years of not being able to play with my children when they were small, I find at 57yrs of age I can climb hills, walk for miles & miles. If only my GP had diagnosed it when I was 25years old. Take heart - its early days for you, it will get better & you will feel that 'lift' and then you can feel healthy & energised. I did not improve after the first injection! It did take 18months - two years to feel well. It does seem a long time but at least you are moving towards good health & not being left to put up with it. I wish you well. :D

    [i:2000c810cb]This message was automatically imported from the original Patient Experience[/i:2000c810cb]

  • Guest
    Guest

    Posted

    May I thank you both for your comments on pernicious anemia. I have just been diagnosed with the condition at the age of 43. My family are grown up but I still feel frustrated and down at the times that I can fall asleep at any time of day. I to am a doctors receptionist and today had my first b12 injection....my doctor felt bad at the pain that I felt with it (a slight sting but I wasn`t expecting it). Being the impatient person I am, I asked when I would be raring to go but wasn`t really given a time limit. Thats why I was glad I have come across your comments and can now realistically, set a goal.

    Wishing you both well in the future.8)

    [i:4b56114013]This message was automatically imported from the original Patient Experience[/i:4b56114013]

  • Guest
    Guest

    Posted

    I was diagnosed at the age of 37, two years ago. I am still waiting for my burst of energy, I seem to get a gradual build up where I'm not so tired and then towards the end of the 12 weeks I feel completely drained again. Also after having the injection for about a week I feel nauseous after eating and do not have much of an appetite, does anyone else experience this?

    It's been very helpful and interesting reading your comments, best wishes to you all.:D

    [i:eefa7db11b]This message was automatically imported from the original Patient Experience[/i:eefa7db11b]

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