It's been over a year of injections for me, and I am still left with some serious cognitive impairment, brutal digestion issues and a permanently higher MCV, temperature dysregulation and higher heart rate.
I worried I am going to die an early death now, and also not be able to enjoy much of the life I do have left.
I cannot work. I have basically become a burden to my family and a source of sadness to my friends who bemoan me.
I had been left so long before treatment that I was almost paralyzed, unable to eat and had dementia.
I was sick for decades with doctors telling me I was fine.
I continue this half life for my loved ones, as I am humbled day by day by new things that this illness takes from me.
My mind, my work, my ability to care for myself, my looks...anything I ever felt good about has been stripped of me.
Is anyone out there left with permanent disability? What do you do with your life this way?
Written by
nessanthemum
To view profiles and participate in discussions please or .
I think there is hope for some improvement if you get enough B12.
I am not medically trained, just someone whose B12 deficiency was not recognised for many years.
"What do you do with your life this way?"
For many years, I was not able to function in the way I wanted to as a mother and a wife.
These days I try to use my difficult experiences to help others avoid what happened to me.
I try to spread the word about B12 deficiency.
Other deficiencies?
Have your folate, ferritin (or other iron tests) and vitamin D levels been checked as forum members commonly report deficiencies in these.
Both folate deficiency and B12 deficiency can lead to a raised MCV . There are other causes of a raised MCV.
Thyroid
Have you had thyroid tests?
It's quite common for members on this forum to also have thyroid issues.
I suggest you put any thyroid test results on Thyroid UK forum on Health Unlocked. It's a very active, supportive forum.
Do you mind me asking which country you are in?
Knowing where you are might help people to point you to most useful info.
The way B12 deficiency is treated varies between countries.
I was left untreated for many years and had developed dementia symptoms and spinal symptoms. I'm in UK and NHS refused to treat me (long complicated story).
I was forced as an absolute last resort to treat myself.
After about 10 years of treatment, I am still improving although the rate of improvement is much slower now than it was in the first few years but I now have a life that I can enjoy.
I need far more B12 than NHS treatment allows for.
If you're in UK, there's a lot more I can post so let me know if you are UK based.
It's possible that some links below may have details that could be upsetting so you may find it helpful to have someone with you when reading the info.
Please don’t give up . If you have been b12 deficient fora long time , your recovery will not be quick . How often are you getting injections ? Perhaps you need them more regularly ? I would do you no harm to have an injection every day , until no more improvement occurs , then just keep to an injection regime which kept symptoms at bay .,Many members on this forum self-inject ,and the marvellous thing about B12 is that you can’t overdose . You can do no harm at all with B12 .
Pernicious Anaemia is an auto-immune condition , and these conditions seldom come alone . The most common “companion “ for P.A. is a thyroid condition . I have Rheumatoid Arthritis, but there are many more ( over 100!)
I hope that you take a modest multi vitamin and mineral tablet , because as a P.A. patient , you will have low or no stomach acid , which is needed for you to absorb all those elements . Pay particular attention to folic acid. (Take the recommended dose for pregnancy, but not a huge amount ) Best of all eat plenty of green leafy veg .
So please keep in touch . I will send you information on how to get B12 single use ampoules from excellent online German pharmacies etc . In case you feel you might benefit from extra injections . ( very difficult to get from GPs , because of their ignorance of P'A.
I am not a medical expert. But it seems to be widely agreed upon that B12 at any dose at any frequency causes no harm. I have seen no exceptions. I agree with Wedgewood's statement, "If you have been b12 deficient for a long time , your recovery will not be quick . How often are you getting injections ? Perhaps you need them more regularly ? I would do you no harm to have an injection every day , until no more improvement occurs...."
The only risk in treating B12 deficiency is under-treatment. Under-treatment includes not getting injections frequently enough, or not sticking to a schedule of injections long enough. I personally self-inject every day, and have followed that regimen, without variation, since last August. Before that I was bouncing around, to poor effect. It was only after I chose a regimen of daily injections, and faithfully followed that regimen, that I saw my symptoms begin to improve. I still have ups and downs, but the bad days are not nearly as bad as they once were. I plan to follow the regimen of daily injections for two years. At that time, exercising great caution, I will consider cutting back a little, keeping in mind that very little of substance can be gained by cutting back, while much can be lost.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
So what IT will be in the future
Permanent damage from PA?
B12 deficiency and bronchitis 
Suffering since 4 years and now pains are increasing.
