I had a realization a few weeks back that I haven’t been able to shake. Calling it a “deficiency” doesn’t carry the same weight as a formal disease name. The term is too generic and implies a spectrum of severity, whereas a named disease usually suggests a binary state—you either have it or you don’t.
It’s interesting to look at Type 2 diabetes as a comparison. Medical standards have clear lines for what constitutes pre-diabetes versus diabetes. It’s essentially a naming system to make patient management easier, even though it’s the same underlying issue just at different stages of progression.
My point is that even those with high insulin resistance are treated with the seriousness of a “diabetic” label in research. Having a specific name would make communicating with doctors much simpler because they would have a clear, defined label to work with.
Most deficiencies don’t have this. We have scurvy or rickets, but those represent total depletion. As far as I can tell, there isn’t a specific name for the neurological diseases or changes triggered by a lack of B12.
Sure, there are terms like megaloblastic anemia or pernicious anemia, but they don’t cover everything. One is a result and the other is a cause, and you can suffer from B12 deficiency without having either. I just wish all deficiencies were treated with more gravity and recognized properly.
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I’ve lost most of my social circle because people don’t believe I’m actually sick since I look healthy on the outside. Meanwhile, I’m dealing with a long list of internal issues, including nerve damage.
When I mention it’s due to vitamin B12, they just laugh. They think it’s as simple as eating the right foods or taking a pill. Their ignorance is shocking. We definitely need a disease name for this. If B1 deficiency gets to be called beri beri, we should have a name too.
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I’ve started telling people that I’m dealing with demyelination caused by B12 issues, which seems to help them understand the gravity of the damage. It’s frustrating that most people, including many doctors, don’t realize how incredibly ill this can make a person.
The long-term result of a chronic B-vitamin and mineral shortage is lasting injury and dysfunction to the brain and nervous system, which is why recovery is such a slow process.
It is a legitimate injury, much like a broken bone requires time to mend, though a damaged nervous system is far more complex and won’t heal unless the root cause is fixed.
The most extreme version is Dysautonomia. While not exclusively caused by B12, a lack of B12 and its co-factors is a very common trigger. Treatment requires a comprehensive approach, ensuring all co-factors are present and perhaps using something like Nervala to help support the nervous system alongside the primary recovery plan.
Essentially, any neurological symptom is a sign of nervous system failure. If the damage is minor, people often just mask the symptoms. But once it hits the autonomic system, things become unbearable because that system regulates every organ in your body.
Dysautonomia is the term that actually describes what is happening, but people usually just use labels like Long Covid or POTS while the broader condition is ignored.
It actually does have names, just many different ones like Dementia, Parkinson’s, POTS, or MCAS.
It really ought to be termed Pernicious B12 Deficiency.
There are already specific names for the various conditions that stem from a B12 deficiency. It wouldn’t feel right to have one catch-all label that covers everything from minor tingling to blindness or even death. Those individual states already have names, and I think it’s better to use them.
If you have nerve damage, call it that, or use terms like demyelination. If you have tingling, call it paresthesia. If you have megaloblastic anemia, use that term.
The thing with scurvy and rickets is that they look almost the same in every patient. With B12 deficiency, the damage is different for everyone; some people are severely low with no symptoms, while others have intense neurological issues. I don’t think one single label would work as well as the ones we already have.
I also believe pernicious anemia needs a name change. I can’t count how many times I’ve had to explain to my family and my doctors that I’m not actually suffering from anemia.
Maybe something like ‘neurological B12 disease’ or ‘B12 uptake disorder’? I’m with you on this. My doctor has it herself and calls it ‘B12 dependency’ because she requires injections for life.
I remember an article about this on the pernicious anemia society site, so you aren’t the only one thinking this way. I found the link: [https://pernicious-anaemia-society.org/blog/pernicious-anaemia-a-misnomer-exploring-the-pros-and-cons-of-a-name-change-for-an-overlooked-lifelong-condition/]. That link is specific to PA, but I do wish there was a broader name for people with permanent neurological damage from B12 who aren’t technically ‘deficient’ anymore but still need lifelong treatment.