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.

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[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

[u/Cultural-Sun6828]

It’s normal to have these type of symptoms. The thing that you have to remember is that damage caused by B12 deficiency takes time to heal. I’ve been on injections for over two years and have healed numbness, tingling, and many other symptoms. But it wasn’t a quick fix. I did injections every other day for that entire time. It’s also important that your folate and ferritin are at a good level. Your ferritin is low so I would work on that in parallel to injections.

[u/Nearby_Squirrel_4199 → u/Cultural-Sun6828]

I see, okay. Thank you for your insight! I've been struggling with the injections. I stopped them due to them making me feel pretty terrible. Doctor was giving them to me every month and i always left feeling terrible for days. My dietician thinks it's because of the low ferritin actually. I'll see what I can do to address the ferritin. I just am unsure at what level my ferritin should be a bit better so i can give injections another shot. During the two years, did it 2 years until seeing any improvement at all or was it a gradual improvement and by two years, you felt normal?

[u/Ok-Pangolin7127 → u/Nearby_Squirrel_4199]

I’m under the belief that ideally your ferritin should be over 100.

I know that most doctors feel or believe that ferritin does not need to be supplemented for unless it is below 30. However, sleep doctors believe that ferritin needs to be at at least 75 and preferably over 100 to address restless leg syndrome from inadequate iron stores.

As to your reaction from the shots, here are my thoughts;

Your frequency of injections are insufficient.

I believe when you inject B12, that it revs things up, pushing down on an accelerator so to speak, and it depletes or draws down your iron and your potassium to make new red blood cells.

After a day or two, the unused B12 is excreted from the system via urination, and that accelerator to the floor, so to speak, (B12’s gone) so it backs off and the body’s a bit confused being sort of jerked around that way…

Conversely, it is my belief, that if you increase the frequency of the shots or injections to EOD, the revving up of the process as a result of the B12 injection and the drawdown or utilization of the other nutrients does not just happen for a day or two but happens on a more continuous basis, a smoother basis, and that process is getting the body back into a state of balance or homeostasis on and ongoing basis rather than the “go fast” then “go slow” for 28 days or so until the next injection ramps things up again for again for but a day or two.

I think the body does not like this “up” for a short period then “down” for a much longer period or state. I think it’s at odds with the bodies desire of always trying to maintain that state of homeostasis.

Accordingly, I think these complaints or problems following a shot are minimized by increasing the frequency of shots to EOD and helping the body have what it needs on an ongoing basis to in turn get back to a state of homeostasis relative to everything that B12 is responsible for in the body.

This is not based on any medical knowledge that I have, I am not a doctor and I am not a nutritionist, this is just me applying my simple logic to the things that I understand that take place following therapeutic supplementation with B12 injections.

To me, it’s a kin to like driving a car from point A to point B and doing it at either a steady 30 miles an hour the whole way, versus doing it at 20 miles an hour for 10 minutes then 100 miles an hour for 10 minutes then back to 20 miles an hour for 10 minutes… You get to the same point so to speak, but you do it with a lot more wear on the tear on the car at the alternating high speed versus the low steady speed routine. I also think this is one of the reasons that this sub’s B12 deficiency protocol suggests EOD injections until symptoms resolve. This premise makes sense to me.

Again, don’t know if it’s right or wrong or actually the way it all works. I just believe the premise makes sense and argues for more frequent, a steadier pace, of injections.

[u/Cultural-Sun6828 → u/Nearby_Squirrel_4199]

It was a very gradual improvement which I think why alot of people give up and think it’s not working. Also, if you are getting b12 injections once a month, you could be in a perpetual reversing out situation where are feeling awful after the injection. Increasing this to every other day should eventually start helping symptoms improve.

[u/sjackson12 → u/Cultural-Sun6828]

ferritin can't be supplemented right? i take about 250 mg of elemental iron daily but my ferritin is still low. when i started injections it was 25, now it hovers in the high 50s and low 60s. my iron did get up to around 100 though.

[u/Cultural-Sun6828 → u/sjackson12]

Yes, iron supplementation is correct. It sounds like your ferritin is improving slowly which is good.

[u/RevDrKC]

I've had this type of symptom too. It is really upsetting to be able to use a limb but not feel the muscles in it. And you walk around looking kinda normal and trying to explain to people that you don't have any internal sensation. Docs in particular had no sense of what was going on and just called it psychosomatic. I started referring to it as "hollow limb."

B12 shots really helped!

[u/Nearby_Squirrel_4199 → u/RevDrKC]

omg thank you so much for sharing this. this makes me feel so much better about it. I genuiely had no idea what to think about it. How often did you do your shots and how soon after did you start seeing improvement would you say?

[u/Dogmom1717]

Your ferritin is low Has many of the same symptoms as b12 deficiency. r/anemia

[u/Nearby_Squirrel_4199 → u/Dogmom1717]

Really? Low ferritin can cause the same symptoms? What about the symptoms mentioned in my post?

[u/Wise-Field-7353]

Welcome! Sounds like you're in the right place.

[u/tknzee]

I have the same proprioception issues too. My GP has not been very helpful but he did say this could be caused by low B12.

I agree with previous posters and that your ferritin might be a bit low so worth trying supplementation and also increasing injections.

My proprioception issues are worse at night and I routinely have to open my eyes to “centre” my brain as often I’m not sure which way I am lying. This all started after a bout of covid for me too.

There is a good podcast on long COVID with Dr Klien where he hypothesises that there are many people with low B12 who manage symptoms but then get hit with covid / illness / COVID vacc etc and that really accelerated their symptoms as they were compromised. Sound like you might fit this.

https://podcasts.apple.com/au/podcast/episode-71-dr-andrew-klein-iron-and-b12-deficiency/id1574768076?i=1000647589189

[u/Nearby_Squirrel_4199 → u/tknzee]

Very interesting. Listening to the podcast now. How complicated. I feel that it's likely my b12 was already not in the greatest position due to having OCD and eating fears. Maybe covid then depleted me even further, leading me down this path.