Long term Undiagnosed b12 deficiency ... - Pernicious Anaemi...

Pernicious Anaemia Society
22,479 members15,872 posts

Long term Undiagnosed b12 deficiency effects

jitendra_g2
jitendra_g2

I was suffering from b12 deficiency since childhood, I am now 42 and last year only I was diagnosed for b12 deficiency. You can imagine how I was able to cope up for 41 years. What type of life I would have gone through. Whoever I talked to about my health they would only say that is all in my mind just don't think about your health and carry on with your routine even doctors use to advice me to refer a psychiatrist.

As I was leading a life of struggle I use to think that everyone leads to live like that only. May be they might be leading through their willpower until I started b12 shot since last year.

I am not good in expressing my views since my learning ability was poor due to my illness although I was very much interested in studies I use to study only for 1hr daily and not continuously by taking nap after every 5 minutes and it was very hard me to understand things I studied. I used to get exhausted very soon in the playground while playing. Besides all these I was suffering from ibs, frequent sinusitis due to hypotrophoid inferior turbinate all that was diagnosed 3 years back until then doctors use to treat me with antibiotic for sinusitis. For ibs I stopped taking milk products 3 years back.

After taking b12 shot I imagined what a worst type of life I have been living so many years. What a beautiful life I have missed to live in the past.

There is much more to mention but it will be long to mention.

10 Replies
oldestnewest
clivealive
clivealiveForum Support

That's sad jitendra_g2 - hopefully you will some improvement in your health with continued B12 treatment.

I was 13 years between gastric surgery 59 years ago and a diagnosis of P.A. so I know a little of what you have gone through and I'm still "clivealive" at 77.

I suffered for 25 years before diagnosis, so know exactly where you are coming from! I sometimes get upset about the amount of years that I wasted, dragging myself through each day, struggling to do the bare minimum. But I'm now trying to look upon it as a new start, because dwelling on what might have been is doing me no good right now.

Two years post diagnosis and starting jabs, I wouldn't say that I'm 100%. I have to pace myself, or I get exhausted. But things are better than before.

I can now go for a three mile walk and still function the next day - that's definite progress!

I hope that you continue to improve and to enjoy life :)

Dawn45
Dawn45
in reply to topazrat

Seems like you making progress I hope one day I will be able to walk more than 10 minutes without been drained to the next day take care x

jitendra_g2
jitendra_g2
in reply to Dawn45

Yes there is much progress . I used to sleep long hours a day still I was unable to feel fresh after waking. But now half an hour sleep during day time makes me feel fresh and energetic.

While starting b12 shots I didn't know where the exact site to be injected. At first I injected on inner side of thigh. That was very painful and I started to feel exhausted and started sweating. Second time I injected on the outer side of thigh and a inch or two above the knee. Although I didn't exhausted this time but the site become slightly swollen. Even now I am having pain and little swelling at that site. It's almost about 20 days from now when I took my second shot. But later I injected on the correct site and was comfortable.

It's very much essential to know the exact location, size of the needle, and the technique espcially for injecting b12 on the thigh.

Have you also tried going gluten free as the casein protein in milk is similar to gluten.

My situation was the I noticed issues with milk first, then B12D was diagnosed and finally I stopped gluten (wheat, barley, rye) and my symptoms disappeared.

Sad to hear about your suffering, I too have suffered for 55 years. Long story short, I almost died 2 years ago as I was in last stage of vitamin b12 deficiency.

lizblow
lizblow
in reply to dwpbastard

What are the last stages?

hellmice1
hellmice1
in reply to lizblow

I don't know about Dwpbastard's situation but I had severe anaemia with macrocytosis and bone marrow failure which is supposed to be late stage.

Funny thing is, I recently got hold of some of the blood results when I was really ill and I wasn't even below range for a b12 deficiency.

I was supposed to be a rare case but I believe there are a lot of other people out there who have had it as bad as I did.

Recently found out that I also had a stroke at some point, Doctors don't know when that happened although I believe it is B12 related and probably happened when I was seriously ill?

I will write a bit more and upload my results when I get the chance.

Feeling a bit ugghh at the minute..

Self injecting which is just as as well cos I have not had an NHS injection since March due to the receptionist at the surgery being a muppet but that's a new battle I will be fighting soon.

jitendra_g2 It's very sad to hear you have been undiagnosed for so long.

How was the deficiency discovered? I presume you are in the UK and had B12 blood tests from time to time.

jitendra_g2
jitendra_g2
in reply to Cetus

I am from India and 5 years back I have to give up my job because I use to feel sleepy during my office hours but unable to sleep as I used to be in office. A short nap sitting on the chair doesn't help me. I use to feel as to lie down on the office floor and sleep nicely but was not possible in the office. Unable to remember things , feeling confused, all these made my moral down in the mean time I have visited many doctors but none of them were able to come out with the result.

Since I used to have whole body pain and slight headache continuously 24 hours I decided to go to neurologist. Finally one day I went to a neurologist and told all of my symptoms. She asked me to have my B12 level checked.

And that's how I got properly diagnosed.

When I checked my B12 level was 86pg/ml. The Dr. prescribed me B12 injection alternate days and vit B12 capsule.

That's how I got proper diagnosis and treatment.

You may also like...