24 years old- just been diagnosed with PA

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Hey

This week I was diagnosed with Pernicious Anemia caused by antibodies against intrinsic factor. I've known that I've been low in B12 for at least a year when my results came back as 187ng but I didn't know what this meant. I kind of ignored it and then had some bloods done in ocotober where my B12 levels had gone down to 167ng. Did tests and found out about PA.

In this past year and a half/2 years I've had all sorts of problems from mental health, sleep problems to stomach problems, being diagnosed with GORD. I've also had this strange feeling in my head and top of my neck like vibrating and sometimes a electrical sound coming from the base of the head. Last week I started having symptoms in my right leg, muscular cramps, pains and weaknesses. 

After looking at the symptoms of PA and other complications of it, I am concerned that I've had this for a period of time and it is this that's causing it. problem is, my doctor didn't seem to know much and just printed off something from google and said that after 6 months of B12 injections, we will see if my symptoms persist.

is it normal that I'm being like this? Am I being paranoid?Also do we know prognosis even after having B12 injections. Another doctor asked if I have thyroid/arthritis problems in the family and most immediate family members do. Should I be worried about this?

Thanks in advance!

Meg

 

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8 Replies

  • Posted

    Hello Meg, 

    it is good that you have a diagnosis and I assume your doctor has started your injections. The usual procedure is six injections over two weeks, this is called a loading dose. Then according to your symptoms it’s either every other day until no further improvement, or every eight or twelve weeks. 

    It is interesting that the doctor asked about thyroid problems, as PA often accompanies a thyroid condition. Has he checked your thyroid function too? It would be a good idea to get this looked at as you have members of the family who have issues with it. 

    Once you are on treatment it should continue for life, please don’t be too worried about it, it is very good that it has been detected. More nerve damage occurs when it goes untreated for a long time. 

    Hopefully you will begin to feel the benefit of the injections within a few months. Don’t worry if the symptoms seem worse initially, this is part of the healing process.

    i think you will find a lot of your digestive symptoms are related to the low B12, also mental health, cramps, muscle weaknesses and weird sensations in the head. 

    I have low B12 and underactive thyroid too. With the correct treatment life can be lived normally.

    It may take time to feel completely well again, so pace yourself, and give your body time to heal. 

    Very best wishes

    Marion 

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    • Posted

      Thanks Marion,

      You’ve certainly made me feel more at ease about it.

      One more question: I had my first b12 injection yesterday. This morning I woke up feeling all foggy, tired and run and spouts I’d dizziness. Is this normal? 

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  • Posted

    It is very common for symptoms to get worse when the treatment begins. Your nerve endings have been starved of B12 and once it becomes available again it floods them, so where they have struggled  suddenly they go into hyperdrive!  It has been explained as though you have a poorly tuned radio with a faint signal, once tuned in the volume becomes over loud. 

    If you feel really bad it’s well worth going back to see your doctor and explain how you are feeling. 

    I personally found it was several months before I fully felt the benefit of the injections, but I had become very ill and had multiple infections and courses of antibiotics before I got the diagnosis of low B12.

    If you take a look at the Pernicious Anaemia Society website there is a full symptom list on there. I was astounded when I checked, how many areas of the body, muscles, nervous system etc... can be affected by a lack of B12. You also need to have your folate, ferritin and VitD levels tested, as these are important to allow the B12 you are being given to be used, and they can often be low too. 

    I do hope things will begin to improve for you soon.

    Very best wishes

    From Marion 

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  • Posted

    As Marion says above It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

    I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

    A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

    It is also important that your Folate level is monitored as this is essential to process the B12.

    There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

    Symptoms of a folate deficiency can include:

    symptoms related to anaemia

    reduced sense of taste

    diarrhoea

    numbness and tingling in the feet and hands

    muscle weakness

    depression

    Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

    Be assured there is life after P.A but injections are for life not just for six months.

    I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" and over 75..

    I wish you well  

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  • Posted

    I have PA with Intrinsic Factor Antibody. I highly recommend the book, “Could It Be B12?”  This book along with Facebook’s Pernicious Anemia Sociaty saved my life.  As low as your B12 is, you are having neurological issues from it.  B12 drive most of the works in your body. Your body needs folic acid to process B12.  Learning how to manage you nutrients will be a life long task. 

    Most doctors do not know how to manage it. Some doctors are open to listening to the new information you will learn.  Most importantly, advocate for yourself.  Getting enough B12 is vital. Most patients self inject several times a week.

    the vibration and electrical sound are neuro symptoms. 

    Wish you well well on this journey.

     

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  • Posted

    Hello Meg,

    I haven't been diagnosed with Pernicious Anemia yet, I have been avoiding the doctor, but I think I will have to just go and figure out what is going on with me, I too have been dealing with low B12 levels for about a year, however I have been loosing my balance as well, I am feel like a drunk person walking at times, do you have that issue too? It seems to affect my balance mostly in the mornings, does anyone know if this is related? I am considering buying a walking cane, I am only 25 and I have a feeling I will be needing some support often. I thought about buying a folding one since I don't want to use it all the time, only when I feel I need it. I am kind of embarrassed to even have to buy a walking cane, please if you can relate, let me know your experience. I found these canes but I am not sure if they are safe or stable enough for me to use? https://www.fashionablecanes.com/search.html?q=folding[/b]

     

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    • Posted

      Steve,

      please dont one wait and put off testing.  I searched for an answer for 3 years.  In that time, I lost the use of my left leg, my brain was not working, my short term memory was so bad I had to sell my company, I couldn’t stay awake sleeping 18 hours a day, I lost my ability to drive, I would get lost in stores and even driving my neighborhood, developed tinnitus, tachacardia, stomach ulcers, and so much more. PA is a fatal illness that needs to be controlled. Many thing came back but will never be like it use to be.  If you suspect PA, get tested ASAP and be sure they test for intrinsic factor antibody. 

      I went through 12 doctors before finally getting a diagnosis and then I was told I could have as little as two weeks to live.

      my case was extreme but waiting is honestly a waste of life.

       

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    • Posted

      I am sorry about that Dena,

      I will, I am making an appointment today with my Dr. to find out what is going on. I am glad I found this forum.

      Thank you

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