I'm part of a chronic illness support group and they did a Zoom session on how to use telehealth visits for physical therapy . The physical therapist referenced an article about scientists recently finding what may be the physiological root of chronic fatigue and ME (myalgic encephalomyelitis).
Apparently there are signs of regulation alteration in parts of the brain in people with these syndromes. This article talks some about how an irregular immune response in the body can alter the central nervous system and cause changes in actual brain chemistry. Since I know many of us struggle with chronic fatigue, and many of us have been misdiagnosed with CFS/ME before getting a diagnosis of pernicious anemia (or B12 deficiency), I thought this article might be of interest to some of you.
As a youngster I repeatedly had some very nasty bouts of the flu. The fatigue set in & I were diagnosed with chronic fatigue & M.E. At a later date I underwent brain scanning for another condition, it was the John Rad in Oxford that looked at my results.
I have three small but deep lesions in the white matter ! I have gone on to show I now have small vessel changes to the brain. How I would love somebody to explain all of this to me & study my cells.
What ever it is it has most certainly blighted my life.
That's really interesting... It makes me wonder about how B12 deficiency might mimic traumatic brain injuries. I know TBI can affect the autonomic nervous system, and so can pernicious anemia.
I've read a fair number of members on this forum complain of balance and proprioception issues, which also happens with TBI. I've seen people complain of PPPD type symptoms where their brain is confused about where the body is in space, and that also goes along with TBI and "vascular assault" to the brain.
You mentioned having small vessel changes in your brain, which I would think fall into the "vascular assault" type category in terms of altering your brain on a structural level. I have PPPD and my pernicious anemia was discovered after I couldn't recover from a bad concussion for several years after it happened. In ways I started getting worse "concussion" symptoms months and months after it happened. Really makes me wish more was known about how advancing B12 deficiency alters the brain.
It's too easy for doctors to say strange symptoms are "psychosomatic." If more was known, I feel like more people could get help before they get to a place of irreversible, debilitating neurological dysfunction. In my opinion, it's pretty awful that I was seeing a neurologist for years and they didn't think to look for B12 deficiency or pernicious anemia. It was a GP who found my PA. This was after I'd been seen by a "highly skilled" neuropsychologist who determined my unrelenting/worsening concussion symptoms were "psychosomatic." He was an extremely kind, respectful individual, but ultimately ignorant - ignorance is so damaging with medical care!!
Yes, exactly - my report identified "scattered patches of white matter T2 high signal" but the extent not excessive for age. I was then 59.
Conclusion ? "Normal intercranial appearances".
But you are right. Normal by comparison with others being sent for brain MRIs is probably "diluted reassurance". Not easy for well people to get all the way to a brain scan via neurology, is it ?
I was surprised - given my cognitive, concentration and memory issues - that nothing was there to indicate why that happened to me. Very relieved also.
I found some interesting research articles in past when I searched for "B12 deficiency white matter lesions".
I've had a brain scan in past and was told nothing suspicious, I wished now I'd been better informed and more curious and asked about white matter lesions.
I'd love to know if my brain shows any signs of previous damage now.
I'm curious to know if previous damage shows up in a brain scan even if remyelination has happened.
For others on forum, nerves have layer of myelin around them. B12 deficiency can lead to demyelination of nerves.
We all have so many unanswered questions as to why we feel so unwell.
I have had many diagnoses but very few explanation's. One very pleasant ENT consultant did show me on a screen the damage to my brain, I was facinated but didn't understand it.
It's all too easy to label patients with Chronic Fatigue, M.E, Fibromyalgia & of course we mustn't forget FND ....... I would much rather they told me they hadn't a damned clue.
I'm considering contacting the John Rad to see what is involved if I were to take part in the next study. I would be a good candidate for it.
Jillymo, I'm so sorry for how you've been affected. I've read that B12 deficiency can cause lesions on the brain, but I'm a little taken aback by how many people who responded to this post are mentioning brain lesions or visible brain changes on MRIs and such. It kind of makes me wonder about what my brain would show at this point... 😬
I agree with you, I wish there was more research and study into the brain's of people who have pernicious anemia. I know the PAS will do surveys to ask for member's preferences about B12 related topics for study. Maybe it's possible to start collecting more specific information about our brain health for a longitudinal type study or something?
B12 does play a direct role in how the brain regulates itself and communicates with itself:
I remember no longer being able to read expressions on even very familiar faces or select the correct meanings of often fairly common words used in simple sentences. Certainly felt like a brain thing - very confusing and exhausting trying to understand people, without access to the tools we rely on constantly .
Small example: My mum told me that her partner's hair had "receded". I could only understand it as "re-seeded" - and honestly thought she meant he'd had that Elton John procedure: rows of hair-shoots growing, replanted over his scalp like a rice paddy field !
You'd really expect that brain to reveal something amiss, wouldn't you ?
At this stage, any GP/hospital appointments required my partner (interpreter) to be present and return to my teaching career was out of the question.
Interesting study area, I would have thought, first needing wider acknowledgement as a problem for some of those with B12 deficiency.
Interestingly, many with LC & vax injury describe symptoms consistent with TBI. Spike protein causes inflammation, endothelial dysfunction, and Micro clotting in blood vessels, which affects all body systems, including muscles & joints.
they are not very consistent with vaccine injury since there is no increased blood clot risk with the mRNA vaccines (although rare clotting conditions were observed with the J+J vaccine which was withdrawn in the US and probably other countries).
There is an interesting article from Stanford Medicine on whether the production of spike protein as a result of vaccination is likely to cause endothelial damage. Their conclusion is that:
"Spike-proteins generated by the mRNA vaccines for COVID-19 -- while their lack of toxicity may not be absolute (they could in principle still bother neighboring cells, for example) -- are a good bet to be a lot less toxic than the spike proteins produced during the viral infections the vaccines prevent."
Thousands of people who are living with the effects of these conditions would argue otherwise, my sister being one of them, as would a body of researchers investigating these effects. I'm too ill to get into a debate on this however.
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