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:, 55-64 Male (Patient) Published: May 28

When I was 25-30 years old, I started noticing something was wrong when, every time I stood up, I would almost pass out. To counteract this, I would train myself to stand up slowly. As time went on, I was extremely tired. I couldn't understand this – I had plenty of rest, exercised regularly, and had a healthy diet. The fatigue wouldn't stop, then when I was in my 40s, my hands and fingers would tingle constantly, and I noticed I couldn't retain my short-term memory very well. I also had bouts of anger for no reason. My breathing seemed to be getting worse. I went to see a doctor, who took a blood test and diagnosed me as having a deficiency in vitamin B-12 with pernicious anemia. The doctor told me that anything I had lost I would not gain back, but I could maintain what I did have left by taking B-12 injections for the rest of my life. My lower intestines do not absorb the B-12 as they should, so I give myself the injections every month.

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Comment from: jayneb, 35-44 Female (Patient) Published: April 17

I was diagnosed three years ago after suffering severe exhaustion and confusion and just didn't feel right. I had lots of injections over 12 months and then was informed my levels where too high. I now have had eight blood tests and was diagnosed with anemia. Then, after a change in diet, I was told that I'm OK. I am going to the doctor again to get tested, and to point out my fears. I don't believe I have been diagnosed correctly.

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Comment from: SLW, 45-54 Published: March 21

I started with bilateral numbness in both legs. It progressed up to my belly button. I also had extreme fatigue. By lunch time at work, it was hard to lift my legs to get into my car. When I got home, I'd got to bed in the evening at 7, which is four hours earlier than my normal time. My husband wondered what was wrong with me. It was extremely frustrating for me at work as well as at home. Good luck to anyone who gets this disease.

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Comment from: 55-64 (Patient) Published: August 28

At age 55, I was recently diagnosed with pernicious anemia. I too, was fatigued, off balance at times walking, sick a lot with flu symptoms, etc. I now give myself vitamin B-12 shots once a week. It was discovered through blood work that I was very low in vitamin B-12. I eat healthier, exercise a couple of times a week and feel somewhat better.

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Comment from: NJ, 35-44 Female (Patient) Published: August 28

I was diagnosed about a year ago with pernicious anemia after having these symptoms: racing heart, numbness in my hands and feet, nausea, diarrhea, difficulty concentrating, stumbling over words, shortness of breath and very, very tired. I generally felt terrible. My B12 levels were at only 165. My doctor started me on the shots. I had one every day for a week, once a week for a month after that, and now once a month. I get blood work every three months, and if it looks low, I get extra shots at first. Most of my symptoms have disappeared, but I can definitely tell when I'm due for a shot. The diarrhea returns and some of the mental cloudiness and heart racing comes back too. The treatment is for a lifetime, but there are worse things. Now that I know what it is, it's easier to deal with.

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Comment from: Peg, 55-64 Female (Patient) Published: August 22

I have been on Aciphex for four years and didn't know it limited and/or stopped B12 absorption. Last winter, I began to experience constant dizziness, exhaustion, muscle pain and weakness, confusion, memory loss and increasing problems with balance. My doctor did blood work and discovered that I was at the bottom of the acceptable scale for B12. He gave me an injection and within a day, I noticed a marked improvement. Now I take 4000 mcg of B12 complex daily and have resolved most issues with my pernicious anemia, save for some loss of energy.

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Comment from: 35-44 Female (Patient) Published: August 04

At 44, two-and-a-half months ago, I was diagnosed with pernicious anemia. I had extreme fatigue (no matter how much I slept), my heart was racing, I was constantly sweating, I had chest pains, shortness of breath, and depression. I am on medications that relieve most of my symptoms, but I am still very tired most days.

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