hello all, i've been diagnosed with pernicious aneamia for the last 5 years.
and it's real good to find web site like this as always thought i was the odd one out. after all this time i'm only just finding out all about aneamia and the way it can affect people and realising that the symptons i've been having are not that strange that i think i've been going mad. the pins and needles and constant pain in feet legs skin areas in general the sore tongue tiredness and joints that ache like mad. i went to the docs only month ago with all these symptons as driving me insane and to be told that my body depressed and nothing wrong and given anti depressants which made to feel a fool , now more determined to go back now and try again as only been hving injections once every 12 weeks and don't think its enough at the moment to help me through this. has this happened to any one? thanks for visiting me here good luck to all.

hello all, i've been diagnosed with pernicious aneamia for the last 5 years.
and it's real good to find web site like this as always thought i was the odd one out. after all this time i'm only just finding out all about aneamia and the way it can affect people and realising that the symptons i've been having are not that strange that i think i've been going mad. the pins and needles and constant pain in feet legs skin areas in general the sore tongue tiredness and joints that ache like mad. i went to the docs only month ago with all these symptons as driving me insane and to be told that my body depressed and nothing wrong and given anti depressants which made to feel a fool , now more determined to go back now and try again as only been hving injections once every 12 weeks and don't think its enough at the moment to help me through this. has this happened to any one? thanks for visiting me here good luck to all.
I am on B-12 shots 1 cc per month injection plus I supplement the B-complex sublingual(under tongue liquid) between injections. I also have pernicious anemia. I am sure that your injections are not adequate if you are having those symptoms. B-12 is water soluable and if you are only getting that injection once every 12 weeks, you are probably not storing any of it. You should be getting a lot more a lot more often if you have pernicious anemia.

thank's for that definately made me mind up to go to doc's next week and try and put things straight and get help thanks again its reassuring and a help.

hey both of you

If you have pernicous anemia, it means that your stomach will not take up b12 vitamins because

1 you don't have intrinsiq faktor or
2 the cells which take up b12 are not working

both things mean that you will have to take b12 shots (to get the b12 directly into the muscles)
normally the values need to be in between 150 an 750 but lots of people feel bad if they get under 300. For people who get shots it should be over 1000 to function normal (you need to be in advance of your problem!!!)
thats what I experienced too
(Also: tablets under your tongue dont help that much, it too little)

In other words:

since you had a lack of b12 you need to build up and store some in your body. first 1 shot every week for a month and then try to build down, but as soon as you feel bad you need another shot!!!
I had and still have 1 shot every 14 days

It took me nearly a year to get my level up to where I started to feel better. I was at a job where speaking is essential and I couldn't carry on an intelligent conversation and it was my boss who said I needed to see a Dr. I walked like I was drunk, was getting those LLmerett shock(sp) and acted like I was nuts. When I went to my the neurologist she shrugged it off and said the lesions on my brain were a normal part of aging as well as the other symptoms and sent me home to learn how to destress myself. So a year down the road as things got even worse and I was having stranger things yet happening, my boss again said to see someone else or I could lose my job. So I went to another neurologist and he had me diagnosed in 2 hrs before he even sent me to have lab tests. That was 8 yrs ago and thanks to the crappy lady neuro I have permanent nerve damage, optic nerve atrophy, perepheral neuropathy and nerve lesions everywhere(the ones that she said were normal part of aging I was 47)and I'll never be the same. I was very close to dementia and I have yet to regain all my past memories, thank God some did come back, I couldn't remember having my own daughters, like someone else raised them instead of me. I have injections every 2 weeks, 2ml. In 2 weeks my level drops real far real fast as I don't hold the b12 well at all. I give my own injections and hubby will do them in the arms so like a diabetic I keep the soreness down. So you need to get a better hold on the level and keep it up once you get there. My tongue was sore for over a year, everyone is different in recovering. PA seems to affect everything including gastro, I never had acid reflux til the PA was diagnosed. It takes the body at least 5 yrs to show symptoms of B12 depletion, we need little and we use little but that little makes a whopping big difference to the body.

thanks for visiting me i'm starting to feel less like a worry wart and hope i can now return to the docs and make her listen as cant keep going on the way i am at the mo. i work 40 hrs week and find i'm so tired joints hurt so much sore areas etc so feel 80 not 40 yrs old. i thought i was going senile as memory not good and forgetting every day things laugh it off but worried really. so thnka again for the feed back and knowing others out there on same boat and can tallk to is a great help.

I have injections every 2 weeks, 2ml. In 2 weeks my level drops real far real fast as I don't hold the b12 well at all.

hey Nancy

Hope you read this...
Ever tried switching to another kind of b12?
I had the same problem, 10 days after an injection I could feel I needed another injection but I couldnt get one yet, I had to wait til 14 days had passed. I searched the internet and found out that I was getting:

Cyanocobalamin.
(1 mg, natr. chlorid. 8 mg, mononatr. phosph. 3 mg, aqua ad iniect. ad 1 ml.)
I switched to:

Hydroxocobalamin.
(1 mg, natr. chlorid. 8 mg, natr. dihydrogenophosph. dihydr. 3 mg, alcohol benzylic. 15 mg, aqua ad iniect. ad 1 ml.)

They say it works a little slower but it stays way longer in your body

Maybe this will help other readers too? Good luck!

I agree, you need to take more of the B12 by shot in the muscle. Learn to do it yourself. It's cheep and easy and nearly painless with the little needle and the Vitiman does not sting. Good luck and take care. It is not something to horse around with. The word Pernicious ment just what is says and it used to cause death. But with shots life is normal.

(Also: tablets under your tongue dont help that much, it too little)

Please do further research. Research HAS shown that daily sublingual doses DO get absorbed and often work better than the shots (since the shots aren't given often enough and are often the inferior form of B12-- cyanocobalamin). Many people are being helped by sublingual doses of methylcobalamin-- 1000-5000 (and more) mcg per day. It is very old school to think that only shots will help with B12 deficiency. The same way it's sad that low levels aren't taken seriously enough (in some countries, anything below 500 is considered low!) and that the serum level of B12 is still what docs mostly rely upon. If my serum level had accurately detected my B12 def. 6 years ago, I could've averted these last years of worsening symptoms! Methylmalonic acid and/or the Schilling test should be used. I had high levels of B12 in my blood but I had a high MCV and MCH. A few years later, I had the methylmalonic acid tested--which was high and indicated B12 def. I started on oral doses of B12 and finally the fatigue is lifting, the breathing is so much better (almost non-existent now).

Tab

Hello All,
Can you tell me what pernicious aneamia is? Did I spell that right? I have always been diagnoses as being aneamic. My mom was, my 2 sister's are. The last 2 years I have been getting B-12 shots. I have been going through alot with my back, that is how I found this site, I usually visit the back pain site. Anyway, I just had another surgery and was not able to give blood prior to surgery. No name was ever given fro my aneamia. Test have been done, but other than B-12 shots nothing else has been recommmended or nor as it really been explained to me. I have had weird symptoms for years, like tingling in tip of pointer finger and thumbs, soreness to touch in arms, like I am bruised. I have the same feeling in my legs but that's has to do with the injury to my back. Do any of these symptoms sound like aneamia? Of course I have been tired for years, jittery, I can't remember much, it is joked about alot, I really can't stay focused. My husband jokes around that my ADD is getting worse. But serious, I never thought any of these symptoms could have any thing to do with me being aneamic! :confused:
Thanks so much!
Jean

Hello All,
Can you tell me what pernicious aneamia is? Did I spell that right? I have always been diagnoses as being aneamic. My mom was, my 2 sister's are. The last 2 years I have been getting B-12 shots. I have been going through alot with my back, that is how I found this site, I usually visit the back pain site. Anyway, I just had another surgery and was not able to give blood prior to surgery. No name was ever given fro my aneamia. Test have been done, but other than B-12 shots nothing else has been recommmended or nor as it really been explained to me. I have had weird symptoms for years, like tingling in tip of pointer finger and thumbs, soreness to touch in arms, like I am bruised. I have the same feeling in my legs but that's has to do with the injury to my back. Do any of these symptoms sound like aneamia? Of course I have been tired for years, jittery, I can't remember much, it is joked about alot, I really can't stay focused. My husband jokes around that my ADD is getting worse. But serious, I never thought any of these symptoms could have any thing to do with me being aneamic! :confused:
Thanks so much!
Jean
Pernicious Anemia is the state of being unable to absorb or store vitamin B-12 through food sources. There are many underlying causes for the reason you can not store the B-12. The reasons are: Your stomach can't make the enzyme that interacts with the food source b-12, you can't take in the food source: red meat, eggs, dairy.You have had part or all of your stomach removed, you have liver problems that do not allow for storage,(alcoholics who have been drinking heavily for years have this problem) There is autoimmune disease where your body sees the B-12 as something foriegn to the body and kicks it out. The symptoms are primarily the same with some people experiencing more uncomfortable symptoms than others. I once got so low before diagnosis that I was not having any pain and did not know it was unusual. I had gone right past the burning mouth etc. and when I got my first shots, I was swearing up and down that I was allergic to the shots until the hemo laughed at me and told me that I was just beginning to get normalized enough to experience pain again.