Pernicious Anemia: a Rare Cause of Radiating Upper and Lower Extremity Pain
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- čas přidán 25. 07. 2024
- In this video will discuss pernicious anemia and its sequelae: vitamin B12 deficiency and megaloblastic anemia. This is a rare cause of upper and lower extremity radicular pain, so primary health care providers should be aware of it. We will get into the weeds on this one, and talk about the three types of autoantibodies, laboratory findings, and gastric juice findings. Although an autoimmune attack is usual, there are other causes of pernicious anemia which we will get into.
This lecture specifically for GI-GU: (Wk5)(Thurs)(Win2021), Part 1 of 2.
From my personal experience, there aren’t many doctors who are well versed in PA. I didn’t have a low B-12 blood level, but had anemia of chronic disease for three years before being diagnosed. There was a litany of systemic symptoms...extreme fatigue was the first. Many doctors still think this is a disease that only affects the elderly. The average age at diagnosis is 45. I was 49 when I first became ill. It took a brilliant MS doctor up at Johns Hopkins to diagnose me. He knew there were a couple of diseases that mimic MS....he ran 2 or 3 different blood tests for PA (intrinsic factor, etc.). He said the higher the numbers, the more definitive the diagnosis. He called me a couple of days later and said my numbers were off the charts . A hematologist I saw on a regular basis for two years couldn’t diagnose it. I went to all the best specialists in my metropolitan area...even went to MN Mayo Clinic. They were all clueless. This is very sad. PA is not a “nothing” disease. I have to take a B12 injection every 2 weeks, every PA patient is different. If you’re not diagnosed within the first 6 months, you will most likely have permanent damage to nerves, gastrointestinal system, especially stomach. While undiagnosed, I developed Atrial Fibrillation. PA is also known to cause arrhythmias. There isn’t a PA Society in the US, only in the UK. This disease makes you more prone to a number of blood cancers, and stomach cancer. I have an upper endoscopy every 6-12 months. Delayed diagnosis can lead to lifelong, permanent, debilitating conditions. Most doctors play down PA...you’ll be fine, just take your monthly injection. This is malpractice, in my humble opinion. If you suspect you might have PA, educate yourself...and don’t give up. Read the book, Pernicious Anemia: The Forgotten Disease. The author is someone like me, wasn’t diagnosed until disease was very advanced. He also started the Pernicious Anemia Society in the UK. He, I believe, was also in his forties when he became ill. This book helped me a great deal. Someone else had experienced the same unique set of symptoms. Again, I was diagnosed by an MS doctor, not a hematologist or rheumatologist (autoimmune doctor). Wishing you all the best of health. God bless.
Hi I was diagnosed last year I’m 36 after being told for years that I was simply anemic and needed to just take iron pills.
What do you do besides the money injection?
Comment helps explain my symptoms I lost the ability to produce stomach acid. Thank you
Levels in Japan are desired to be 1200. Anything below 500 is deficient. Doing this raises a lot of money for the medical system is sad
@@Keema340 my wife is 37. She was told the same thing just iron. Well I could taste iron when I was intimate with her through the nipple. So I knew something wasn’t rite. Do one injection a day for 7 days. Then 2 per week for a month. Then 2 per month for life.
Hello can I ask you some questions please if you have twitter account?
I have PA. I complained the it felt like my muscles weren't getting oxygen (among many other symptoms. ) my MCV was slightly elevated at 100 to 101. My hematologist said that was just me...that my red blood cells were normal but at the far end of the bell curve. My MMA was normal. My B12 serum was on the high end of normal. My intrinsic factor antibody test was slightly positive and i was told that was insignificant. For the next 2 years i went on a diagnostic odyssey and was told everything from im overly sensitive to just anxious to psychosomatic. I deteriorated to the point of needing a wheelchair if i was out of the house. I was finally diagnosed and treated. The delayed diagnoses has been incredibly detrimental. Doctors need to know that if you have neurological symptoms with no other diagnosis, they need to do a trial of b12 injections. Don't tell the patient they are imagining their symptoms and need a psychiatrist.
I'm PerniciousAnemia/ Gastritis and nerve damage, I stay sick and very tired all the time. I also have an ulcer, just alot of health problems.
I’m having these described symptoms and a lot more-doctors are uncertain and dismissive. My mother had stomach cancer and passed from it, though I’ve been checked for that much (insinuating possible genetic predisposition to stomach and intestinal issues). My iron and testosterone are super low, but my B12 and B9 are very high. I think they aren’t absorbing correctly but was hoping to get your input. I need treatment desperately…my spine is burning and completely wasted. My feet, groin, hands, eyes all burn with numbness too. It’s clearly nerve damage, sadly.
Thank you for any help 🙏
Thank u. Pls upload more haematology related videos
tachycardia .dyspepsia . Tingling numb hands and feet , loss of balance , chronic fatigue, lack of air . I was lucky diagnosed in early 20’s . GP thought I had leukaemia she was very excited when she found it to be PA. Three monthly injections made life ok for a while . Now I need monthly , if stressed fortnightly. Very few doctors are on board with this . Very few doctors know anything about pA and I’ve had it for 40 yrs so I’ve been through a lot of doctors
I have autoimmune pernicious anaemia (positive intrinsic factor antibodies and positive parietal cell antibodies) but I never had the anaemia even with severe B12 deficiency. Normal MCV. I also have vitiligo, Hashimoto’s thyroiditis/Graves, myasthenia gravis, alopecia areata. I use 2000 mcg daily of sublingual B12 spray. I find this superior to B12 injections personally. Very interesting about the tongue and parietal cell antibodies!
thanks
You need to do injections it effects your thyroid also.
@@rogerthat6221 I’ve used sublingual B12 spray for 13 years for autoimmune pernicious anaemia. Works great for me.
@@ScarlettDuchess ur symptoms
@@azamqureshi8963 There is a long list of symptoms! My symptoms are numerous but here are some of them. The only permanent symptoms of B12 deficiency that I have are nerve damage, areas of long term memory loss and hyperpigmentation spots.
memory loss…losing my keys and my phone constantly in particular..loss of long term memory for certain things that I should remember like my Grandfather cutting himself on Christmas day and going to the hospital! no recollection of that at all;
prolonged bleeding if I nick or cut myself (up to an hour when very deficient);
unpleasant body odour..no amount of showering can get rid of;
brain fog..extremely severe when very deficient;
fatigue…sleeping 15 hours a day at worst and feeling so tired after waking up;
enlarged red shiny tongue with a crack down the middle;
Chronically enlarged pupils (a 20 year symptom that went away with B12)..my sister had chronically small pupils for years until B12 got rid of that symptom (she has autoimmune pernicious anaemia too)
Light sensitivity..the sun hurt my eyes
Mosquitoes would be attracted to me and bite me like crazy and the bites would turn into huge white lumps
Poor immune system (chest infection..in the end it was bad..possibly bronchitis or pneumonia)
hyperpigmentation brown spots on the skin;
white skin spots show up on my forearms to join the existing permanent vitiligo spots (they blend in so cannot tell the difference) but the B12 white spots go away again with B12.
mental health issues, (depression, anxiety, psychosis, OCD, suicidal thoughts);
numbness, tingling…I have permanent nerve damage as not treated with B12 in time.
I’m here in the uk and I was diagnosed back in 2021 and my haemoglobin was very low to me having to have blood transfusion I am not monitored I tell them I’m having other problems and they ignore this it’s very frustrating my stonache swells up a lot with just drinking water . I’m exhausted and have b12 every 3 months to which I struggle to get my injection as the nurses don’t book me in correctly so have to wait an extra 1 week or 2 weeks just to get this redone absolute night mare !
There still out to harm every one its called culling
Can you have it if you don't show megaloblastic or macrocytic anemia?
I think I have this. What tests should I ask my Dr to do? Also what specialists diagnose PA? Thank you!🙏🏼♥️
I have anti pareital cell anitibody positive and intrinsic factor negative and im having extreme fatigue nerve pain pins and needles.
Apko autoimmune gastritis hain kay bro or autoimmune gastritis kaliya konsa test karwai
Please i need ur help
I get a monthly b_12 injection. Intra muscular. Is it helpful to also use those b-12 tablets you can put under the tongue that doesn’t need stomach acid to absorb? Or are these complete useless.
Is there IF AB test based on types? If I get the IF blocking AB test, and negative, does it mean I should take another type of IF AB test for type II/III? My mom has all the anemia symptoms, Fatigue, balancing issue.
I have PA and nearly died from it before being diagnosed when I was in ICU. My hemoglobin levels were 4.5 when I was hospitalized. I have severe nerve damage in my feet and legs which are mostly numb. I did have numbness in my hands and lips, but the feeling came back in those areas after receiving numerous transfusions and B-12 injections. I still suffer from gastritis, colitis and have bouts of tachycardia. I was also told that I am 3 x more likely to have stomach cancer due to the condition.
Most of the Drs that I’ve seen (outside of the hematologist) know very little about this condition. I do have a question - I still have a lot of pain in my legs, Could PA be responsible for the continuing pain?
Autoimmune gastritis blood test sujjest
Dr Gillard, a pharmacist told me that I can give myself the B - 12 injections but my doctor told me no that I could hit a vein. Could you tell me if it's safe to give myself the injections please? I have vitamin B - 12 deficiency ( pernicious anemia ) , hypothyroidism which first started as hyperthyroidism... after radioactive treatment I was diagnosed with hypothyroidism. I often feel to tired to go to the doctor's for my B - 12 injection every 2 weeks. I heard that sometimes B - 12 injections enter the body too quickly and it can cause certain problems for certain people. It this true? If yes , what can I do? Sorry I forgot to mention that I also have CKD ( chronic kidney disease ) and no I don't have diabetes. Last Winter they were at 43.
Subcutaneous injection is extremely safe
Lots of people with PA self inject. Just a matter of learning the right way to do it. There are lots of CZcams videos demonstrating techniques if your doctor isn't willing to help. A lot of PA patients resort to buying their own b12 injections online because their doctors aren't giving them enough to keep symptoms away. I have PA and inject methylcobalamin subcutaneously on a daily basis. I take just enough to keep symptoms away. I finally found a doctor who follows my symptoms instead of trying to fit me into some predetermined injection routine.
@@KMx108 thank you. Since my comment on here I went to see my doctor once a week for a shot. I'm done with the shots and I now take a large dose of sublingual vitamin B12 ( the methyl cobalamin one ) I take 2500 a day along with 1mg folic acid. The pharmacist told me that this works just as well as the shots and besides I don't think my doctor was giving me enough ( 1 shot of 1000 once a week ) I didn't feel no difference at all. I've started on the sublingual one on the 4th Feb 2024. I have read that it can take months before you feel the full benefits and that sometimes if you had it for a long time but you weren't checked for it , pernicious anemia can cause irreversible damage. I don't have faith in doctors anymore. I live in Canada .
@@caty9995 my doctors failed me for 7 years before I finally found one who diagnosed me with PA. By then, I was in really bad shape but once I started injecting methylcobalamin, I could tell it helped as soon as that very day. The key was my dose had to be big enough and often enough. Everyone is different and my experience is not the norm but 1mg injections every other day were hardly addressing my symptoms. When my doctor increased it to 10mg the improvement was significant. I inject as needed to keep symptoms away and have had to do this daily for the past year. I also take large doses of methylfolate. I started with 1mg, then 2, then tried 5mg. I'm up to 25mg as my "sweet spot." If I reduce my folate dose, while keeping b12 injections constant, my nerve pain returns. Occasionally, I do trials to see if I can take less and still keep symptoms down, but so far, I haven't been able to.
@@caty9995sublingual or spray does no good, you need to inject yourself often with B12 from the PA society, its cheaper and better than any damn doctor🤬
i tested negative for parietal cell antibodies but positive for intrinsic factor antibodies, does that mean i'm type 1?
That’s the most common lab result for PA. Many are positive for IF antibodies and negative for anti parietal cell antibodies.
@@Ellie-qq9zm i actually tested again and tested negative for both this time?
@pandapower5902 hmm that’s interesting. I wonder why they retested it? Regardless of the antibody testing if you have low b12 it needs to be treated with b12 injections
@@pandapower5902the intrinsic factor antibody test is not very sensitive. It is prone to false negatives. I had this happen (where my IF test was positive and then went negative) and it caused my treatment to be delayed. Don't let that happen to you.
I have many of these symptoms , from the blood test they know that I have low b12 , the doctor gave me 10 shots of b12 and i felt better, but now they cut it down to 1 shot per two months , i already feel bad , problems with my stomach , i can't sleep for nights , i have asked my doctor to give me more b12 but they refuse !!!! I need help .
Buy it online from the PA Society. Cheaper and easier than suffering through dumb doctors😎
A number of B-12 supplements are claiming to contain Intrinsic factor, are these claims legitimate and are they effective if a person is lacking their own intrinsic factor ?
The only thing that can help somebody who is truly vitamin B12 deficient, are injections. And you have to be careful with vitamin B12 because it is stored by the liver (even though its water-soluble). In pernicious anemia, the problem is typically not a direct problem with intrinsic factor.
@@douglasgillarddcprofessoro5285 Thank you for your reply.
other videos say that is exactly what is wrong as the immune system prevents the intrinsic factor rendering the b12 supplement or food useless. I have been watching a lot of the docs at PA society in England who are also PA @@douglasgillarddcprofessoro5285 They say an aggressive B12 IM program will be needed for the first month and often every other day to then weekly,bi weekly and then monthly depending on the symptoms improving.
Its pronounced 'mag lee o'