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: 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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Comment from: boomerdog, 55-64 Female (Patient) Published: May 01

My tongue felt raw for several years. I had traveling pains all over and muscle weakness. My osteoarthritis got much worse. I had fatigue and constipation. When I received my diagnosis of pernicious anemia, I started taking sublingual B12. My joints felt better within two days. I still have the neuralgia pains. Maybe they will stop soon.

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Comment from: Alexandria, 45-54 Female (Patient) Published: February 11

Approximately 7 to 8 years before I was diagnosed with pernicious anemia I noticed symptoms. It has been approximately 12 to 14 years now. It started as stomach issues and I was told I have IBS (irritable bowel syndrome). I became extremely tired and couldn"t get through a day without a nap and many "lounging around" times. I had 3 young kids at the time but never felt they were the reason for my tiredness. As time went on, my feet would tingle and I often had cramps in my feet. Then the tingling in my hands began and soon after that my hands started shaking. I worked part time as a nail technician but had to stop due to the shaking. My doctor decided I was depressed and that"s why I have these symptoms. Fast forward to 5 years ago when I decided to stop antidepressants because they were making me feel terrible and were no help at all! I saw a reality medical show on TV where a woman was describing her symptoms and they were identical to mine. So I saw a new doctor and blood test revealed I had close to no B-12 in my body! I have been doing weekly shots ever since. It takes about a day for the shot to kick in but at around the 5th day, I find all my symptoms are back and I struggle to get to day 7 and do another shot. Going many years undiagnosed, my heart has been affected, my memory and speech are affected, I lose my balance walking, I get exhausted doing minimal things such as brushing my hair, my teeth, fixing a meal, walking from one room to the next, my heart is always pounding and has skipped beats, I have lost some hearing and eyesight and I can"t concentrate for more than a couple of minutes. This condition has taken over my life. I can"t work and it"s very difficult to drum up enough energy to maintain any relationship. All these things are still happening even with weekly shots and I"m only 51 years old now. I feel like 100 years old! I am trying to see a blood specialist in hopes of finding other ways to deal with this.

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Comment from: Judith, 65-74 Female (Patient) Published: November 14

A little over two years ago, I fainted twice in the same day. For months, perhaps a little over two years, I had been struggling with extremely low energy, and was constantly forcing myself to perform my daily work, to the point of profuse sweating on my scalp at the least bit of exertion. I would have to lie down for 10 or 15 minutes after struggling into my pantyhose, for instance. Getting in and out of our car was a challenge, as lifting my legs up and over the relatively low door sill was incredibly difficult. I constantly felt I was observing the world through a dark corridor, because I was experiencing tunnel vision more and more frequently. After the second time I dropped to the ground in the same day, I was taken to the local hospital, where I stayed for the next week as test after test was performed. After five days, my symptoms led to the test that confirmed PA (pernicious anemia), and I began a regimen of B12 shots daily for the next two weeks. I believe that an emergency surgery for a blocked intestine a couple of years previously, probably was the beginning of this issue, when 12 to 14 inches of the large intestine was removed. I also had a severe hiatus hernia repaired about that time, and that might have had an impact. I have been anemic since early childhood and cannot take iron by mouth, so have had to have periodic iron shots, as well. In order to keep the symptoms of PA under control, I am now having shots about once every 5 days. If they are farther apart, I have trouble remembering names and words, a real concern for someone who delivers lectures. I am shaky, and I also have trouble lifting my arms and legs, and have to lie down after very little exertion. The biggest clue that my next shot is needed, is the fact that my head perspires profusely, to the point that my hair is wet, and my makeup runs, with the least bit of exertion. I'm still not sure if this is the final diagnosis, even though my doctors are satisfied, because I simply cannot function on the usual one shot per month at this stage. Since that doesn't work for me I have been doing research to see if there are any other suggestions for dealing with PA; and I feel I need to know a bit more about cyanocobalamin and other forms of B12.

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