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? Submit Your Comment

Comment from: EP, 55-64 Female (Patient) Published: August 19

I wonder how severe the nerve pain associated with pernicious anemia can get. My doctor suspects I've had it a long time and I've been treated with B12 and B9 for 3 years but still have severe burning nerve pain during the day and it wakes me up every night.

Comment from: Jenn S, 35-44 Female (Patient) Published: July 19

I had lost 20 lb. and was getting cold, chills, and catching colds from everyone. I also had irritability, loss of appetite, weakness and fatigue. The doctor said the pernicious anemia was because of malabsorption, I had low B12 and iron, and almost no other vitamins and minerals. I'm a 42 year old recovering alcoholic. I get B12 shots every other week. Probably had it for a while, my son noticed I started having symptoms when doctor said to stop drinking and get energy shots.

Comment from: Tad, 55-64 Female (Patient) Published: November 16

Tingling feet and hands and shortness of breath were my first symptoms of pernicious anemia. I was diagnosed in 2016. I was 51 years old. But I had those first symptoms at least 10 years before my diagnosis. It took a long time and a new doctor to figure it out. Other symptoms were headaches, high blood pressure, and heart rhythms too fast, now too slow. I also had weight loss, tongue soreness and memory loss. It was managed with a shot monthly but soon going to biweekly because monthly is not managing symptoms any more.

Comment from: bonnie, 75 or over Female (Patient) Published: July 17

Sleeping 20 hours a day was my symptom of pernicious anemia.

Comment from: DittoRocks, 45-54 Female (Patient) Published: May 10

Exhaustion day and night was my symptom of pernicious anemia.

Comment from: laurietlaw, 55-64 Female (Patient) Published: May 07

I have no symptoms at all of pernicious anemia. I am getting a shot every day for 7 days, then weekly.

Comment from: Davineb66 , 45-54 Male (Patient) Published: December 20

I take a B12 shot every 7 to 10 days for pernicious anemia, if I go much past this my hands start shaking and I get unsteady.

Comment from: Misslc, 19-24 Female (Patient) Published: December 13

I wonder if anyone else with pernicious anemia gets strong pains up their head, sort of like in the skull.

Comment from: Hawkey, 65-74 Female (Patient) Published: May 09

My symptoms of pernicious anemia are dizziness, heavy legs, heartburn, pain between shoulder blades, loss of appetite, lethargy, and depression.

Comment from: Taffy, 65-74 Female (Patient) Published: April 18

My symptoms of pernicious anemia are weakness, fatigue, hair loss, nausea, depression, and shortness of breath.

Comment from: Kerredwen, 45-54 Female (Patient) Published: January 26

I could not believe how difficult it was for me to discover I had pernicious anemia! I have had every symptom imaginable, and to top it off, my grandmother had it, and I did not remember this till my mother reminded me; all I remembered was that she gave herself B 12 shots when I was young. I have had tremendous dizziness and lightheadedness for a couple of years now, immense fatigue, hopelessness, tinnitus, extreme shortness of breath, and very recently rapid weight loss due to vomiting, diarrhea, and zero appetite. Probably the most painful and disturbing issue recently was an incredible burning feeling in the pit of my stomach whenever I overexerted myself. I just had to have a blood transfusion today of 2 pints of blood because my hemoglobin was below 7. I go back to the doctor tomorrow to find out what my B 12 regimen will be. I am so afraid that I went so long before identifying this, I will have long term issues.

Comment from: Gwen, 65-74 Female (Patient) Published: October 27

I have had B12 deficiency for some years. I also had a thyroidectomy 46 years ago and now need thyroxine. My symptoms with regard to B12 included extreme fatigue, low concentration, and feeling cold. An outward sign of pernicious anemia was dry patches of skin on various parts of my body particularly in the underarms and on my torso. As soon as I began B12 injections I felt better.


Anemia: Common Causes, Symptoms, Types, and Treatment See Slideshow
Comment from: Houston Texan Fan, 45-54 Female (Patient) Published: September 04

Early 2013 I was having problems with my heart racing. I went to the doctor, he sent me for pictures and stress test and everything was normal. I then started feeling exhausted all the time, and so I went to a different doctor because my blood pressure medicine needed to be renewed, and he sent me for the typical blood and urine tests. I thought everything would be fine; wrong! I was called back in his office urgently, he told me my B12 level (221) and iron were low and he started B12 shots once a week for eight weeks. He sent me to a gastroenterologist and found out that I had a small bleeding ulcer in my esophagus and bigger bleeder in my stomach and baby ulcers throughout my intestinal track. I am on 40 mg Protonix and I am supposed to be once a month on my B12 shots, but I don't even last that long. My B12 and iron are in normal range. I give my self B12 shots every three weeks but it doesn't last long because I have exhaustion, tingling in toes and fingers and heart racing at times. I feel like I need to be back on once a week but scared to talk to my doctor about it because of me being in normal range.

Comment from: badsinger, 45-54 Male (Patient) Published: May 05

All my life I was one of those who rise at 4:30 am and I ended my day usually drifting to sleep at 10:30 pm. I also worked 7 days a week and maintained a large house on 2 acres. Then one day I started to feel really sluggish and dismissed it as though I was getting older; less energy. I thought I was burning out. Then I noticed that if I did not eat anything all day my energy would burst up full throttle, though my mood would swing rapidly, yet if I had a meal, healthy or not, my energy level dropped. I became more tired, fatigue set in and what could be a simple chore like taking trash to the curb would exhaust me for hours. I had to push myself to do the easiest of things and more often than not, just felt like I had died inside. I still do. B12 injections worked for a short time for my pernicious anemia and today I fight the demon inside me who took away my energy and the feeling we all get to enjoy a full day of activities without having to wrap a blanket around me and sleep all day wondering where my energy and the day has gone.

Comment from: Girlie16, 45-54 Female (Patient) Published: April 14

When I was in my early forties I had vertigo, ataxia, cognitive decline, IBS (irritable bowel syndrome) with diarrhea, tingling sensations all over, a creepy crawly sensation on my scalp (like lice), joint stiffness, vision disturbances, ocular migraines, muscle twitching, peripheral neuropathy, fingers and toes cramping into twisted formations, and extreme fatigue, but no diagnosis. After years of tests, years of it's 'most likely stress', it's 'stressful being a single mom', and the one that sent me into a rage acting like a kooky person and demanding a new neurologist, 'it's all in your head', I finally got an answer; pernicious anemia. My B 12 level was so low that it was immeasurable! It was all in my head; affecting my central nervous system! My new neurologist had never treated a patient with an immeasurable level, so he had to research a high but safe level of injections that would saturate all my tissues but without a risky reaction. I received daily injections for two months and then weekly injections for three months. During that initial treatment, I developed a non-itchy rash and horrible acne which lasted about a year. But I didn't care, because I felt great! Now my injections are on a monthly basis which will continue for the rest of my life. Interestingly enough, about 5 days before my injection is due, some of those symptoms reappear in full force; usually brain fog, fatigue, and muscle contractions. I was told it would take 5 years to reverse the neurological damage that could be reversed. Now, at age 51, I am past that point. So the damage has been done, but I still feel better than I did all those undiagnosed years! It's infuriating to think such a simple test isn't included in an annual exam.

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!

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.

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.


Pernicious Anemia See a picture of pernicious anemia and other conditions See Images
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.

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.

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.

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.

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.

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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Comment from: vt_rita, 55-64 Female (Patient) Published: January 06

In the past year I have had an altered taste. Foods don't taste the same. I have had numbness in the pads of my feet, they felt almost swollen, I have been so tired and then all of a sudden the top of my tongue was tingling. I thought that at first it was due to using Splenda instead of sugar. But I had gastric bypass surgery back in 1994 and have been taking sublingual B 12 since them. I changed my dose of B 12 on my own but will be consulting my endocrinologist when I go back for my annual visit. It does sound like pernicious anemia. This is the first side effect I have had from the bypass surgery. I have been very healthy until now.

Comment from: 55-64 Female (Patient) Published: October 15

My grandfather had pernicious anemia and so did my mother, an aunt, and an uncle. I have all the symptoms, but my doctor says my B12 is not low. My levels have not been checked since March of this year. It was 334. This is low normal. I have read that sometimes intrinsic factor must be checked to get a correct diagnosis. I feel so tired all the time. My hemoglobin did show up to be low. It was 10, but my doctor did not put me on iron.

Comment from: juliea, 65-74 Female (Patient) Published: May 21

I have colitis diagnosed 2 years ago; since then have lost balance, have fallen, and am clumsy walking. My ankles hurt and are easily injured, can"t exercise the way I want. I have peripheral neuropathy and am extremely tired. Every symptom falls within the list for pernicious anemia. I had a B12 and folate level drawn yesterday, so now have to wait. Good luck to you all.

Comment from: Lolac, 35-44 Female (Patient) Published: April 11

I"ve had severe reaction to coldness, muscle pain, extreme fatigue, lack of concentration, pain in arms which feels like nerve damage and more recently dizziness. I got B12 checked which showed 164, the general physician said although it was low he didn"t feel the need to treat it as the symptoms were attributed to another medication I take for ulcerative colitis and arthritis. I explained I had experienced these symptoms before I began the medication. Having read many case studies on the pernicious anemia site I"m convinced that is the problem. I am only 37 and my quality of life is terrible, I"m so tired and this is not good as I"m a mother of a two year old.

Comment from: Katie, 65-74 Female (Patient) Published: October 24

I was diagnosed with pernicious anemia in my late forties. I was walking with a friend and could barely walk up a slight slope without sitting on a wall for a rest. I had felt tired at times and tingling in my feet and hands sometimes but I was a busy person so just thought I needed to slow down a bit. However that day worried me as I had never been that tired before. My general physician checked my reflexes which were okay and decided to take a blood sample. She sent for me a few days later to do some more tests and found I had a low B12 level so ended up being diagnosed with pernicious anemia. When I saw the specialist, he took one look at me and said I had all the classic symptoms before he even diagnosed me! Once I learned more about it I realized I may have had it for years without knowing! I had low blood count especially after giving birth to my two daughters and I also had 4 miscarriages at 3 months each time, and could have no more children. There were other times I was ill not knowing what was wrong, I had loss of balance, etc.

Comment from: christopher, 65-74 Male (Patient) Published: October 15

I am a male, 69 years old, and was diagnosed with chronic obstructive pulmonary disease (COPD) in 2010. I could hardly do anything that needed effort due to my breathing. I had numerous things going wrong, e.g., dizziness, slurred speech, tingling fingers, and a very sore tongue. Everything was COPD I was told. It wasn't till I went to Greece in 2013, I collapsed and rushed to hospital where I required 5 units of blood, I was told I had severe pernicious anemia and had been severely neglected for about 3 years. I had very little B12 in my body and my hemoglobin level was 4.4 - severely dangerous. Now I am home and being treated properly my COPD has magically gone. I get short of breath sometimes but I know now its caused by pernicious anemia.

Published: August 07

I started having severe abdominal cramping two nights ago and which was preceded by constipation for two days. When I woke up the following more of the beginning of the cramping I felt OK, but then by the afternoon I ate lunch and started having severe diarrhea. Now the cramping has been going on for two days and I can’t keep anything in my stomach. I have been diagnosed with IBS in the past along with anemia, but with my IBS I don’t normally have the cramping.

Comment from: MightyWeak, 35-44 Female (Patient) Published: August 25

I am 44 years old and have just been diagnosed with pernicious anemia. My B12 level was at the bottom of the barrel on the chart on my blood test. My symptoms began vaguely but then quickly got worse as time went on. I am extremely fatigued and my muscles hurt. I have heart palpitations and shortness of breath easily. Mental confusion is a huge symptom for me. I have begun taking B12 injections one time per week. I’m on my third day with it, and I am beginning to see a slight improvement. Thank goodness!

Published: August 25

I was diagnosed with pernicious anemia about five years ago. I was frequently treated for an iron deficiency before I was diagnosed. My symptoms started several years before my diagnosis. I had severe memory loss by age 26. I had tingling in my hands and feet. I had loss of pigmentation, confusion, tiredness, and personality changes. I had frequent visits to my physician and neurologists with no success. Eventually, a rookie doctor checked my B12 levels and found them to be extremely low. So, I was started on B12 shots immediately. It took a while for most symptoms to decrease. I still have memory loss with significant bouts of confusion. The tingling in my hands and feet has subsided. I’ve lost interest in eating meat, including fish. I am now a vegetarian.

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.

Comment from: jon, 45-54 Male (Patient) Published: March 04

I was having difficulty making decisions and was somewhat confused because of pernicious anemia.

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!

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.

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.

Comment from: [email protected], 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.

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.

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.

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.

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.

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.

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.

Published: August 01

I was diagnosed with pernicious anemia in 1994. I had become extremely fatigued, and I needed frequent naps. I had numbness in my legs and hands. My tongue became very sore although there seemed to be nothing visible. I had a difficult time finishing sentences. I was just too tired. With B-12 shots twice a month I have returned to life.

Published: July 29

I was diagnosed with pernicious anemia in 1999. I was losing the use of my hands and my muscles. I really was like a mentally challenged person. My tongue was hurting and that is what triggered the diagnosis. When I was first diagnosed, I had to have a B12 shot twice a week and was not allowed outside on my own. I was trained to do the shots on my own, which I still do. At first, I had to have a shot once a month, but soon after, my doctor changed my shots to every two weeks. That’s what I have been on ever since.

Published: July 14

I have no symptoms whatsoever. I am hardly ever tired and do not have memory loss. After my yearly blood test my doctor said my B-12 was low and suggested I take 2000mcg a day. When I return for another blood in three months, if it has not improved, I will need to take the shots. I remember my Dad having to take B-12 shots when he was his 90's. I am only 69 and was surprised when the doctor told me this. After reading up on this condition, I do see that it can run in families.

Published: July 14

My first symptoms of this disease were extreme fatigue, weakness and muscle pain.

Published: June 27

At the onset of my pernicious anemia, my symptoms included severe exhaustion, pale (almost whitish in color) conjunctiva, tingling in my lower extremities (especially in my feet when I woke up), memory loss and always word searching for what I was trying to convey into words. I felt as if I was getting worse by the day.

Published: June 19

I have pernicious anemia now since l991. I have been taking injections every 3 weeks, but now am told by Doctor that I could take the pill form if desired. At first I could not as this was not absorbed. Now she says I can. I am prescribed a 500 dosage. When I bought pills, it was 1200 time elapsed pills. I took for 3 weeks before next injection. This gave me more energy. Now Dr. says 500= has not heard of new 1200 time lapsed pills

Published: June 17

I was diagnosed with pernicious anemia when I was 27 after my first child. I was off the wall tired. My doctor put it down to having a baby, hubby never home.... get more rest and have a sense of humor. My period disappeared completely, my joints and muscles ached, and I was moody and feeling unable to cope or think well. I had been complaining for a year or so every three months to my doctor that there was something wrong with me, that I was not sick, but something was just not right. I am a very active and driven person. He ran a 24-hour urine test, and they confirmed what I had. I have been having injections ever since. Once monthly is necessary. I am healthy and happy and energetic and living a normal life. I now give myself my injections and go to doctors for a 6-month check-up.

Published: June 13

I started feeling very fatigued, like off the chart tired. 12 hours sleep was not enough to refresh me. I also started having what I called "senior moments", I would lose my keys 3 times between the bedroom and the front door, I would forget the oven was on or that I was even cooking something. My right foot started getting numb, still is in fact. About 1 week after I had one shot of B12, I noticed mental clarity improvements and some relief from the fatigue, no improvements to the numbness in my right foot, but after 3 weeks I was back to the fatigue and senior moments I had in the beginning.... I had a second shot 3 weeks after the first one but I still have not reclaimed my energy level. Oddly enough when this started my red blood cell count was high, but my B12 was at 82. My cholesterol is also up. The doctor has not ordered further testing to see if there is any improvement, I don't feel like this is much of an improvement at this point.

Published: June 13

I suffered from iron deficiency originally, then I had a split mouth, sore tongue and my hair started to go grey and I was only 30. Went to the Doctors who sent me staright for blood tests and came back that I had pernicious anemia, I had heard of it so from then on I had B12 injections and that was 28 years ago. Since them my mother was diagnosed with it. I also have an underactive thyroid which was diagnosed 8 years ago.

Published: June 12

Initially I was extremely tired with tingling and numbness in my hands and feet. My physician linked the numbness and tingling to my spinal chord injury and the fatigue to a bleeding disorder I had at the time. I went to the ER for dizziness and fainting. That is when they ran tests and found that I had b12 deficiency. Initially I was taking the pill everyday but my b12 levels were not getting any better. They switched me to the monthly injections. I have been giving myself the injections for 4 years now. I can tell when it is time to take my next dose because my symptoms increase.

Published: June 09

I was generally feeling very tired but put in down to work. I went to give blood and it was noticed that my iron level was low when I had the blood test before you donate. This was treated with ferrous sulphate. Then low level of vitamin B12 was noticed in further blood tests. I was given vitamin B12 tablets but this did not work as it was my inability to absorb it through the gut which lead to me needing to have injections. I have these every 10 weeks as feels very tired if it’s done every 3 months which tends to be the time recommended.

Comment from: David Sydney Dallime, 65-74 Male (Patient) Published: August 14

I have chronic systemic inflammatory disease evidenced by Graves Disease, Crones Disease, Chronic Bronchitis and Asthma. Do to tiredness, numbing of extremities and bloating my Doctor did a CBC which indicated anemia. Now in the care of a Hematologist I am receiving weekly vitamin B injections and taking B1-6-12 pills plus Foliamin pills.

Published: July 16

In January, I noticed increased fatigue, numbness and tingling. My doctor diagnosed pernicious anemia in late May and prescribed B12 injections one time a month. It makes me feel good for about five days, then I start to decline again.