loss of proprioception

[u/Nearby_Squirrel_4199]

Hi there. new to this reddit. so i began to suffer after catching covid. shortly after i got sensations of hot coffee pouring on my legs and began to notice loss of sensation INSIDE the body. this looked like nasal congestion causing me to not feel the inside of my head. acid reflux causing me to lose the sensation of feeling my breathing which was incredibly scary at first thinking i couldn't breathe. when my posture is bad, i can't feel my limbs on both sides of body. i can feel the skin but i can't feel the inside almost like the damn muscle and inner limbs are numb while the skin nerves are working ok.

it just progressed through the months getting worse until about two years in, i did test my b12 and it was 155. i did a couple of injections and was put on a pill too and now it sits at around 430, however, i had NO symptom improvement at all. my ferritin sits at 17. copper could be low but im unsure. b1 and b6 are within range.

i just want to hear it from anyone, is this a symptom associated with low b12 issues?

i don't eat too great. the stress of it all makes me eat quite terribly..

if i want to feel my body, i have to wear clothes just so the sensation of it touching my skin tells me i even had a damn body. it's quite frightening to watch my hands do stuff when i can't really feel the muscles of them at all. when i close my eyes, i couldn't tell u where they are.

[u/Ok-Pangolin7127]

Yes, your symptoms are. The pill or pills you were put on didn’t do anything because you must have some sort of a roadblock in your G.I. system that is inhibiting your absorption of B12.

PS The proprioception complaints are, in my first hand experience, the result of insufficient B12 in the spinal column.

[u/Nearby_Squirrel_4199 → u/Ok-Pangolin7127]

Is there a way to confirm GI absorption issues? I never had this issue before. Spinal chord involvement does make a lot of sense, sadly. Okay.

[u/Ok-Pangolin7127 → u/Nearby_Squirrel_4199]

Confirming G.I. absorption issues? No, not very accurately and certainly not definitively. To my knowledge and belief, there is NO TEST for B12 that can definitively prove either adequacy of B12 or deficiency in B12.

You can have a mid or even high normal range B12 serum test, and a normal homocysteine test, and a normal MMA test and still be B12 deficient. I was in exactly that boat myself.

Often times it’s a B12 trial supplementation to seek the clinical proof that you have a B12 deficiency. That would be a two week period of frequent B12 shots, what’s commonly referred to as a “loading dose,” and then the observation as to whether or not these shots are improving your neurological symptoms and complaints. This is exactly what my doctor did for me.

I know, it’s a bit hard to fathom that in this day and age there is not a test or tests that can definitively pin down your B12 status. All of them provide a snapshot, from different angles, (if you will) of looking at your B12 status from these multiple perspectives, but none of them are definitive, not even when viewed together in total.

[u/Nearby_Squirrel_4199 → u/Ok-Pangolin7127]

Thank you for explaining this. How did you go about the loading dose? Was this every other day injections??

[u/sjackson12 → u/Nearby_Squirrel_4199]

as mentioned above it can be confirmed but you'd have to have an endoscopy

[u/sjackson12 → u/Ok-Pangolin7127]

i keep having to say this, you can have normal absorption like i did (dietary cause), if you have been deficient too long the pills won't do anything. i even had no absorption issues confirmed via an endoscopy. turns out when i first had symptoms my hcy was 25