Seems to me. : Not a medic nor have the... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Seems to me.

WIZARD6787 profile image
7 Replies

Not a medic nor have the ability to do that job.

Seems to me there is no such thing as B12 deficiency without neurological effects. Most notably fatigue. It seems that neurological symptoms are only considered if peripheral neuropathy is experienced. This does not seem credible to me.

Seems to me the advancement in treatment of B12 deficiency is all but stalled at 1 mg hydroxocobalamin every other day and has been for 25 years. That is considered to solve any problems of any conscience. That does not seem credible in my case.

Seems to me the focus of those trying to help those who experience B12 deficiency is diagnosis. The un-diagnosis and misdiagnosis of B12 deficiency is systemic and many people are suffering needlessly. The effective treatment for a person who is diagnosed seems to not be of interest.

This is not a rant against physicians although I do engage in that at times out of frustration. Nor is it not being appreciative of the work of those that are doing the important work of trying to get other physicians to correctly diagnose.

It is more framing what I am up against.

Written by
WIZARD6787 profile image
WIZARD6787
To view profiles and participate in discussions please or .
Read more about...
7 Replies
16131613 profile image
16131613

I hear you on all those points you’ve made and I agree with them not seeming right

jade_s profile image
jade_s

Well said, as always.

Mental health issues are neurological as well and often get dismissed/forgotten too. And memory loss. And aphasia etc etc. It doesn't help that the brain can't feel pain. Well maybe that's a good thing actually.

Canarian profile image
Canarian

You are not limited by Hydroxocobalamine. I used to take 3 monthly injections of it.

Sublingual Cyanocobalamine Is another route. Directly into bloodstream and has benefit of no liver conversion/involvement.

I was B12 deficient for some years but no longer seem to need supplement. However if I feel symotoms I’ll take sublingual cyano occasionally 👍

If you need more info about it msg me back.

WIZARD6787 profile image
WIZARD6787 in reply toCanarian

Thank you for the information. Good on you for your solve. I did a trial of sublingual only. I improved until I used up all my B12 by moving to another country. Thank you for the offer of sending you a msg. I have my hands full right now. Maybe later.

Canarian profile image
Canarian in reply toWIZARD6787

Not that desperate then ??

TenovSvetik profile image
TenovSvetik

Hallo, i have peripheral neuropathy because of great b12 D. It was in 2016. Till now i have more than 1000 shots of hydroxoc. Feel much better. I will try one shot per week in future. Be happy and dont be afraid !

WIZARD6787 profile image
WIZARD6787 in reply toTenovSvetik

Hey TenovSvetik,

If you research current understanding you will find the current standard in the UK with peripheral neuropathy is 1 mg hydroxocobalamin every other day. I personally see that standard as a minimum and out dated.

I currently inject 4 times a day .50 mg.

Not what you're looking for?

You may also like...

Seems to me.

That frequency of injections is as important if not more than amounts. That B12 injections are...
WIZARD6787 profile image

Transcobalamin

I have read often that B12 in the blood stream is not important and all that is important is the...
WIZARD6787 profile image

ME gets reclassified.

Just been reading that the illness ME/CFS has been reclassified as a neurological illness. I don't...
Poppet11 profile image

Not to give folate until B12d is cured - It makes neurological symptoms worse!

Here is quote I came across today in paper on diabetes/metformin and B12d: "Folate administration...

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.