Patient Comments: Pernicious Anemia - Symptoms

The symptoms of pernicious anemia can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Comment from: boopscor, 65-74 Female (Patient) Published: January 06

At age 25 I became short of breath, and had weight loss due to constant vomiting and hemoglobin of 3. I was tired, very tired, and was admitted to hospital. I thought I had leukemia. Bone marrow showed no leukemia. Schilling test proved pernicious anemia. I was treated with B 12 injections every month since. That was 42 years ago and I have bloodwork and endoscopy routinely. I was able to be an emergency department nurse for 45 years. I feel great!

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Comment from: frustrated, Female (Patient) Published: November 25

I am a 29 year old female. I have been having symptoms of fatigue, hot spots, tremor on one side, foggy brain and bone pain. Here is the kicker that we can't figure out. I have pernicious anemia but my B-12 is fine.

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Comment from: Pammiepi, 45-54 Female (Patient) Published: November 18

My symptoms of pernicious anemia (PA) were weakness, fatigue, numbness in the legs, no feeling in the feet, urinary/bowel incontinence, and awful stomach pains on top of zero appetite. I was also 'off-balance', even falling a few times, and have ringing in my ears which is driving me nuts. Since I had also injured my back, they chalked it up to nerve damage due to my back and sent me to a spine doctor and physical therapy. It wasn't until I developed a wicked urinary tract infection (UTI) that I told the doctor I was concerned about my appetite because I can't eat and vomit pretty much every morning. This prompted a blood test for anemia (due to the history I gave) and revealed I had pernicious anemia. I was given an antibiotic for the UTI, and B12 super potency (6000 MCG) for the anemia. I have had a bad stomach for years (since 20) due to an H. pylori infection which landed me in the hospital for 1 week. My stomach has never been the same since and I still to this day suspect the H. pylori infection, which caused a multitude of ulcers in my stomach and I was later also diagnosed with ulcerative colitis (which I still blame on H. pylori). Now years later I have PA.

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Comment from: Kim, 35-44 Female (Patient) Published: November 13

After my 40th birthday, my general overall health went downhill. I was tired all the time, found it hard to focus, and was not interested in people or their conversations. I had to push myself to be polite to show interest. Then I got ill with pneumonia, took two rounds of antibiotic to treat it. Soon I was diagnosed with shingles. My hands felt numb, 'asleep' all the time. My gums bled when I brushed my teeth. Cold bothered me and I started to lose body hair. My doctor told me I was depressed, tried to prescribe me anti-depressants. I found a new doctor who listened to me. He ran tests and found I was severely vitamin B12 deficient; pernicious anemia. I take monthly shots now, and feel much better. Find a doctor who will listen to you. You know your body best.

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Comment from: Hummingbird, 55-64 Female (Patient) Published: October 10

I suffered from extreme neurological pain and muscle spasms all over for years. I was diagnosed with fibromyalgia for over 15 years. Then I started getting lost, disoriented and lost use of the toes on one foot. An elderly physician recognized the systems, tested and found I had pernicious anemia. I was retired on disability after 30 years; with 2 masters and previously lots to offer. My brain is better but still, like today, I am confused and it is like the floor falls out from below my feet. I feel tired and depressed. The neurological pain has improved 90% but the brain dysfunction is a real issue. On these days, I do not dare drive and almost fell in the shower tonight. Pernicious anemia symptoms can indeed be permanent. I know it has definitely changed my personality. I have a hard time finding joy and happiness even though I am intelligent enough to recognize how good I have it in life and am in love.

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Comment from: helen, 35-44 Female (Patient) Published: July 17

I have just been diagnosed with pernicious anemia, I am 43. Apparently I have had this about 12/14 years, my doctor told me all my symptoms were stress related, he told me I had irritable bowel syndrome (IBS). The pins and needles in my hands and feet were terrible. I would be so, dizzy standing up, my heart was racing so much, then going very slow, I thought I would have a massive heart attack! Palpations were awful as I lay down to sleep, and talking of sleep, I would sleep the clock around if it was my weekend off, all I seemed to do was sleep. My tongue was very painful, my memory was terrible, not to mention the panic attacks, whenever I went outside. But the scariest thing was if I had eaten half a slice of toast, I would feel so full up, I wouldn't have eaten the rest of the day, so I would lose so much weight. And still after all these years, my appetite is terrible, and I am always very cold. This disease is terrible, and what scares me the most, to be told for years 'it's all in my head' by my doctor is just soul destroying. And I still haven't seen a specialist either, I live in Ireland.

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