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?

Published: June 24

I have just been diagnosed with pernicious anemia. The reason I saw a neurologist was due to a complaint of a "constant large burp" in my back. The neurologist took certain blood tests following my comments of "I feel like I am sliding." I did not feel dizzy. I had slight tingling of my left hand and foot and was often dropping things. These symptoms I attributed to using the left side more than the right while recovering from right shoulder surgery. I did note feeling tired, even though I had a good night sleep and often fell asleep while reading a book. I also noted a slight change in diet preference - my appetite for beef disappeared as did my desire for certain fishes. My continual desire for fruits and vegetables did not change and I often felt better (for a bit) after eating a salad.

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Comment from: lasga, 55-64 Female (Patient) Published: July 19

my b12 is 114 and i am allergic to cobalt. The drs don't know what to do. I am extremely tired and discouraged . This used to be a fatal disease until the b12 supplement was developed. With a b12 level of 114, there is not much left. It has dropped from 180 in a year.Is anyone else allergic to Cobalt????? This is what is used to make the B12 supplement.I am desperate and NEED HELP!

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Comment from: V, 45-54 Female (Patient) Published: July 17

I'm 53 years old and was diagnosed with PA about six years ago. I had the following symptoms: fatigue, dry and cracking skin, vagueness, irritability and a general feeling of vulnerability, palpitations, extreme vulnerabilty to cold, muscle weakness especially in my legs and shortness of breath. I've heard the shortness of breath described as "the sighs" and its so true- it's sort of involuntary and irritating to yourself and those around you. I was catching any minor infection around and taking longer to recuperate. I was just so 'not right' and so 'not me'. The best explanation I can give to someone who hasn't experienced it is that it was like my batteries were running down (like the energiser bunny in the ads!). It was awful because I had so many vague symptoms that I sounded like a hypochondriac. I am lucky that I am a social worker experienced in psych work and I knew when it was raised that it wasn't depression although I can definitley see how this is a difficult differential diagnosis to make. I was previously an extremely resiliant person who was hardly ever sick and never felt fatigued or emotionally 'down'. I was (and am) fortunate to have a good consistent general practitioner. A couple of years before I was diagnosed I did have a very severe bout of Glandular fever and I have always wondered if this contributed to the onset of the PA. My Dad was in his early 60's when he was diagnosed (almost by accident by a locum Dr) with PA after he had significant damage. My Grandmother had it and some of my cousins. Funnily we are all otherwise very healthy people. I am just so glad I was aware of this disease. For some reason my blood tests showed marginal B12 deficiency but I had been anemic for quite some time (had heavy periods so it was often put down to this). I am a long term vegetarian who is careful with diet and whether this had some impact on the bloods I dont know. I started with B12 injections every couple of days, then weekly and now I have monthly injections. I totally believe this has saved my life. If I stupidly get behind with my injections I begin to experience the symptoms again after a week or so. This happened recetly when I didnt take a letter from my Dr when I travelled overseas for longer than I had planned-lesson there!. I am so thankful that there is such a simple and effective treatment available and that I live where I can access this.

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Comment from: Celeste Meyer, 45-54 Female (Patient) Published: July 09

I am 45 years old and just been diagnosed with pernicious anemia, but here is the cruncher I also have heamochromotosis which is too much iron in my blood. My doctor has referred me to a specialist because he doesn't know how to treat the both together. I am very worried and concerned about this as I have no family history to look back on, I am scared about my health as I have two sons and one grandson that need me and I need to be healthy for them. I have the confusion and dizzy spells when I stand up, and the tingling in my hands and feet.

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Comment from: iwc350@yahoo.com, 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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Patient Comments

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