I have not written in awhile. Need some advice. My daughter is 26 years old and is Autistic/ has OCD and panic/anxiety disorder. In 2015 she was diagnosed with pernicious anemia. Sh did loading doses and receives monthly shots. Since she is basically nonverbal I have depended on reading all of you for info.
In the past month she has developed a host of issues and symptoms. They include bladder retention, gagging at first and now can only eat puréed food or vomits. Her fine motor skills have diminished and she can not even feed herself her eyes are always dilated and she has lost reflexes. Her gait is unsteady. She has been to the hospital and they ran numerous test. Her b12 was 438. Nothing stood out in any bloodwork. At the first neurology appt yesterday they told us she has lost brain function.
Is there any chance all of this is from the pernicious anemia????
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Lorstor
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Your post is of the kind that will stop people in their tracks and I know that there's not one person who will read it and not be feeling for you all at this very difficult time. It's also a very difficult post to answer, especially because there's a young person involved...who also has other complicating factors.
Monthly B12 shots are usually given as a treatment regime in the USA so I suspect that's where you may live. What I'm going to talk about here is B12 treatment regimes in the UK...however, the principles are the same.
You don't say when your daughter's injection was given in relation to the B12 levels you state. However, irrespective of that, her B12 level is low for someone who is receiving B12 injections. (It's worth noting that the majority of doctors will not be aware of this, measure B12 levels, and assume all is okay if they're within the 'normal' reference range. This is not so). We would usually expect to see higher levels, often of 1000 and sometimes way above that (mine are always over 2000 and we’ve seen them here as high as 5999 (as high as the reference range could record). But that's only part of the story.
Once injections have commenced, using B12 levels as a marker of how effective that treatment is is meaningless. What matters and should be assessed are symptoms...and symptom relief. And, because of her other issues, that's not an easy assessment to make in your daughter’s case (if symptoms return before the next injection is due then that’s an indication that more frequent injections are required - and your daughter may not be able to tell you that her symptoms have returned). So, the idea is to have B12 injections frequently enough to ensure that symptoms are kept at bay and effective repair takes place.
If this does not happen then there's a risk of under-treating the B12 deficiency This can cause neurological symptoms, neurological damage, and other symptoms of B12 deficiency to progress (because there is not enough B12 in the system to affect appropriate repair to all the systems in the body that require B12 to function propery - and every system in the body needs it). In addition, demyelination of the nerves in the central nervous system can cause a condition called subacute degeneration of the spinal-cord to occur (too few doctors have heard of this).
In the UK, those with B12 deficiency and neurolgical symptoms (which your daughter clearly has) are treated with an intensive regime of B12 injections. After the loading doses, they receive B12 injections every other day until no further improvement - sometimes for many month or years. Some people here report that they have to inject every day to get and keep well (nobody knows why, but people do vary widely in the frequency of injections they need and again, many medics are not aware of this).
Are your daughter’s symptoms cause by under-treated B12 deficiency. To be honest, I don't know...it's not a question that can answered in a forum and there are many other things that can cause the symptoms you describe.
However, under-treatment of B12 deficiency can cause the type of symptoms you describe, though usually these symptoms develop slowly and progressively over time rather than rapidly (in a month) as you describe. It's also worth noting that the symptoms of B12 deficient can sometimes suddenly get worse after being previously well-controlled, and an individual need more frequent injections than usual, to remain well - though nobody knows why).
Have to say though, that if this was one of my family members I would want to push their doctors to prescribe the intensive regime of B12 injections (every other day) because the only way to know if this is causing a problem is to give the treatment and monitor the effects of that treatment. Intensive B12 therapy can do no harm (it’s not toxic, addictive or dangerous - despite what some doctors seem to think). So there's absolutely nothing to lose by trying it
Here's some links that give further information: might be worth printing and sharing with your daughter's doctors:
I'm also wondering if her neurologist has arranged for her to have an MRI scan of her head and neck? These scans would show dyeymlination of the nerves in the central nervous system, if this has occurred (though this can also be caused by other neurolgical conditions too). I'm also assuming that she is under the continuing care of a neurologist? And perhaps a gastroenterologist for her GI issues (if the neurologist decides that her swallowing and vomiting issues are not neurological in origin)?
So Lorstor, under-treatment of B12 deficiency can indeed cause the type of symptoms you describe, but other things can to. The only way to know for sure if this is the cause of your daughter's recent health problems is to increase the injection frequency to every other day and see if this brings improvements.
You may have to work hard to persuade her doctors to do this, especially if they are ill-informed about B12 deficiency, so please do post again if you need more help or advice.
I know that all here will be thinking of you and hoping that things go well for you all. Please do let us know how things go.
Thank you so much for the advice foggyme. I have relied on all of you to help understand what my daughter may be feeling and how to help her best. We do live in the states and as much as I wish I could say there is better understanding of pernicious anemia here that is not always the case. Just two weeks ago while at the emergency room I told a resident that my daughter had PA. He said well she is not anemic now. So sad.
We have noticed since this began that even with getting loading doses twice and shots about every three weeks she struggles to keep the B12 up. We do have a great primary doctor for her. She has constantly tried to figure out why she can get a shot and a week later her B12 level is 250.
She is followed by a gastroenterologist and they did an endoscope two weeks ago that came back perfect.
This was her first appt with a neurologist. She order an EEG, MRI, a lumbar puncture and more lab work.
I also talked with the primary and we just got the first of loading doses. She was willing to give it a try. It can’t hurt her and maybe is the answer!
So Thank you again for responding and listening. I will keep you posted. Please pray!
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