Autoimmune neurological B12 deficiency

[etreas]

I came across this fascinating study on an autoimmune condition that results in B12 deficiency selectively in the central nervous system. Cerebrospinal fluid B12 is essentially non-existent but serum levels are normal, making this very hard to detect!

medrxiv.org/content/10.1101...

[Nackapan]

Good to see studies ready for evaluation .

I had / have nonother health conditions to date .

My serum b12 was very low but T2 flares extensive on my brain mri were seen .

Mylination also mentioned.

My central nervous system was the most affected.

Still can't read a book.

Words still disappear from the right as I type .

Have to read watch things twice .

After 3 yes csn ea

Words do not jump about anymore

I can now read an A5 page snd a paper bank statement.

Impossible for 3 yesrs .

Left with s vestibular disorder.

I had a repeat brain scan a year after the first .

T2 flares had lessened

Told less inflammation

Blood markers also showed this.

.

I'd had EOD B12 for 5-6 m

Then every 5 days .

Only 3 times reached 3 weeks .

Medics wanted to get me to a monthly regime . ??

Definitely can recover to a certain extent .

The main lesson is testing and treating with B12 at earlier stages or before this damage starts

[Treesong2023 in reply to Nackapan]

It seems you have been a stalwart helper in here throughout your tribulations. I am very glad to hear of your recovery...our bodies are wonderful things in many ways.

[Cherylclaire Forum Support]

I was sent to an Inherited Metabolic Diseases consultant and had genetic testing in 2018, looking for variants in a panel of genes, which included both CD320 and ABCD4.

Both of these were mentioned in the research - CD320 and ABCD - so I'm assuming there would have been some abnormalities there to find (?)

[None at all were found in my case]

This might be a more useful test for you, Nackapan .... ?

[Nackapan in reply to Cherylclaire]

Yes.Not sure if I'd get them though 🤔

Will definitely keep a reference for myself .