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  • Just diagnosed Pernicious Anemia due to Parietel Antibody

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    Old 12-11-2010, 11:35 AM   #1
    PAMama
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    Question Just diagnosed Pernicious Anemia due to Parietel Antibody

    I am 29 years old, and recently went to the dr to investigate possible thyroid issues as I have been having lots of symptoms. Loss of hair, extreme fatigue, anxiety attacks, numbness/tingling in hands & feet, stomach issues, inability to lose weight, just mentally fogged...well my thyroid is normal. I got a copy of my lab results and a few of the numbers were off/borderline so I looked them up and kept coming back to Pernicious Anemia. My grandfather had this and it says it can run in blood relatives, and some of the symptoms fit but not all...anyway I asked my dr who looked a little skeptical but said fine we will test you, its easy enough and it will put your mind at ease. 1 month later I go back and she says, well, I'm honestly shocked but you have the parietal antibodies, which means your body is attacking the cells of your stomach that make intrinsic factor so you are not absorbing b12. We started injections yesterday starting with 2 ccs, and I have to self adminster monthly and go back for blood levels. I am just kind of lost and confused, I can find a lot of info as to what the actual process behind this disease is, but not what I should expect as to progression, how it will alter/affect my life, and so forth. My husband is acting like its no big deal but I am seriously kind of crushed by this and desperately looking for someone to help me shed some light? What is going to happen to me? Will I get worse over time? Will the B12 injections help me feel better, will they keep working? How young is too young to get my children tested for the gene? I am just feeling very lost and alone and depressed about the whole thing, and everyone seems to hear the word anemia and go with "oh honey you'll be fine just take a vitamin and eat red meat" well thats not what this is...and i feel like no one cares that this life altering thing has happened to me.

    Thanks in advance for any and all help!

    Laurel

     
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    Old 12-11-2010, 02:20 PM   #2
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    Re: Just diagnosed Pernicious Anemia due to Parietel Antibody

    Provided you keep injecting the B12, your life will be totaly normal - the disease prevents the body from adsorbing the B12 in your food, and the shots totaly replace this.

    It might take 2 or 3 months for all your symptoms to abate, but they wont get any worse, you will feel rapidly better, and with the injections you will have a totaly normal life and life expectency.

    Hope this puts your mind at rest
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    Old 01-22-2011, 03:54 PM   #3
    nellie19
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    Re: Just diagnosed Pernicious Anemia due to Parietel Antibody

    Hi. I am 34 and have been diagnosed with pernicious anemia too. I had levels of 220. I was in a bad way. Lots of symptoms you have. It took almost a year to between blood work and shots to feel better. My b12 rose to 440 with sublingual tabs and reg. dr. said it was good. But still felt really bad, and went to neurologist on my own. They want your levels to be over 800. As of now taking 1000 mcg/ml of cyanocobalamin every 2 weeks and level is at 650. I feel good. Still have some underlying issues, but so much better than before. Have parietal antibody too. I am going for an endoscopy on tues. Have you heard anything about diet? can't find a thing about it? I have 3 children and had my son's b12 tested. I feel like you do. Lost, confused, depressed, etc. I am also told have autoimmune disease, but no on can tell me what that is? Crazy. I have no idea other than injections how to treat this and I find that frustrating
    I feel your pain. Any info I find out I will pass along. Hang in there

     
    Old 04-17-2011, 01:45 AM   #4
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    Re: Just diagnosed Pernicious Anemia due to Parietel Antibody

    Quote:
    Originally Posted by PAMama View Post
    I am 29 years old, and recently went to the dr to investigate possible thyroid issues as I have been having lots of symptoms. Loss of hair, extreme fatigue, anxiety attacks, numbness/tingling in hands & feet, stomach issues, inability to lose weight, just mentally fogged...well my thyroid is normal. I got a copy of my lab results and a few of the numbers were off/borderline so I looked them up and kept coming back to Pernicious Anemia. My grandfather had this and it says it can run in blood relatives, and some of the symptoms fit but not all...anyway I asked my dr who looked a little skeptical but said fine we will test you, its easy enough and it will put your mind at ease. 1 month later I go back and she says, well, I'm honestly shocked but you have the parietal antibodies, which means your body is attacking the cells of your stomach that make intrinsic factor so you are not absorbing b12. We started injections yesterday starting with 2 ccs, and I have to self adminster monthly and go back for blood levels. I am just kind of lost and confused, I can find a lot of info as to what the actual process behind this disease is, but not what I should expect as to progression, how it will alter/affect my life, and so forth. My husband is acting like its no big deal but I am seriously kind of crushed by this and desperately looking for someone to help me shed some light? What is going to happen to me? Will I get worse over time? Will the B12 injections help me feel better, will they keep working? How young is too young to get my children tested for the gene? I am just feeling very lost and alone and depressed about the whole thing, and everyone seems to hear the word anemia and go with "oh honey you'll be fine just take a vitamin and eat red meat" well thats not what this is...and i feel like no one cares that this life altering thing has happened to me.

    Thanks in advance for any and all help!

    Laurel
    Hi there,

    1st rule of thumb is "not to panic" because if you do...you'll feel worse. Also, I have pernicious anemia also and my husband thinks it's the same thing like he has....reflux! It is a step up from reflux...I can assure you. Pernicious Anemia affects people differently depending upon how early you caught your B12 deficiency + how early you were treated thereafter. For myself...my doc told me that she can correct nerve damage going back "only" 6 months. She didn't know how long I had pernicious anemia prior to her treatment with B12 shots. My daughter told me that she read somewhere that people who have pernicious anemia have to watch the things that they eat otherwise you'll get alot of discomfort in the stomach, including air locked in there, and you'll reflux.

    I do have the brain fog as you do, the muscles in my eyes are very weak where it's hard for me to focus, I feel fatigue, shooting nerve pains throughout my body, I get out of breath too but that's when you have to go lye down and relax your body. I am 52 and I get the hot flashes, headaches, dizziness. Doctor told me to eliminate the foods that cause you a problem and stick with those that don't make you sick.

    You'll be fine! You'll see

     
    Old 05-12-2011, 05:52 AM   #5
    Coryad
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    Re: Just diagnosed Pernicious Anemia due to Parietel Antibody

    Hi All,
    I was diagnosed with PA about 5 years ago. I inject every week and that seems to keep me on somewhat of an even keel
    Every person is different, but it took me about 2 years to feel better ... I still have nerve problems in my feet but there has been a lot of improvement. I no longer have to look at the ground when I walk and I no longer list to one side when walking... again this may not seem like much but they are huge improvements for me. My hair also FINALLY grew back and looks normal. Will I ever be 100%? Probably not but I'm pleased at my recovery so far. I can tell when it's time for my shot as I get foggy, very fatigued (there is a huge difference between tired and fatigued!) and my joints ache to no end.
    I also have 3 other auto-immune diseases and they all seem to be interconnected, you may have some other issues too.
    There is a lot of misconception about PA. When the word "anemia" is heard, people assume you can take iron pills and be all better. There is help and info out there.... keep looking or e-mail me, I'm happy to help. I've been in your place, I know how you feel.

    Cory

     
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