Demyelination due to B12 - my doc says cannot be - here is the symptoms checklist.......

[Mrs_Somerset]

here is the symptoms checklist for Demyelination Disease, taken fromt he Multiple sclerosis website ( where they state clearly that demyelination can be caused by many other illnesses other than MS, including untreated B12 deficiency.

Overview

Signs & Symptoms Consistent with Demyelinating Disease [with links to information and resources for your patients]

Symptoms in regular text I have

Symtpoms in UPPER CASE TEXT I do not have (yet!)

as you can see I have all but one of these symptoms.

I had to look a lot of these terms up, but these are all symptoms discussed with my doc, even put them in writing for him.....

Visual

•Blurred vision

•Unilateral loss of vision

•Oscillopsia

•Diplopia

Motor

•Trunk/limb weakness

•Spasticity

•Hyperreflexia

•Gait disturbance

•Balance problems

Sensory

•Numbness

•Paresthesias

•Dysesthesias

•Lhermitte’s sign

•“MS hug”

•Trigeminal neuralgia

•Allodynia

•Hyperpathia

•Proprioception deficits

Cerebellar

•Tremor

•Ataxia

•Incoordination

Genitourinary

•Urgency/frequency/retention

•INCONTINENCE - not got this yet

•Frequent UTI

•Constipation

•Dyspareunia

Neuropsychiatric

•Impairment of memory, concentration, attention, and/or processing speed

•Depression

•Irritability

•Anxiety

Other symptoms

•Prominent intractable fatigue with no other cause

So - I wonder why my doc is so adamant my symptoms could not be the B12 deficiency he knew about 3 years ago but left untreated?? mmmmmmmm ;-(

[Gambit62 Administrator]

Frustrating. Think so much of it is that there are so many things out there and B12D is much lower down the priority list than it probably ought to be so it isn't something they pay a lot of attention to or really bother to find out about. Hope that sharing the information with your GP has the desired effect and they do actually start to learn about the problem.

[lindajanes]

Your post was a learning experience for me. Thank you so much for taking the time to write in detail! I was diagnosed with PA a decade ago by accident. I had been referred to a hematologist for another problem, and lack of intrinsic factor showed up in the blood work. I had not been feeling well for at least a decade before that, but was always told it was not PA, even though my mother had it since her 40's. I guess I was too accepting. Anyway, at the time of diagnosis I was told about needing B12 injections and that some of the neuropathy on the soles of my feet and some of my tendon issues would go away.

It is only after discovering this community very recently and reading the founder's books I even learned about myelin involvement. I read everything.g I could find available to the layperson, Mayo Clinic info included, and was still in the dark. I thought so many of the things on your list from the MS Society were separate problems, unrelated to PA, and no medical person indicated they were anything but personal oddities.

Between your post and Martyn's books, I feel like I can go forward with more realistic expectations for myself. For more than a decade, I have been so impatient with me, feeling that other people push on, and so should I. Thank you!

[Mrs_Somerset in reply to lindajanes]

Hi lindajanes,

I love this site too - just like you I was completely in the dark and only through the support of people here on the forums have I managed to get even a partway diagnosis.

My doc refused for motnhs to do B12 test, and completely refused to to vit D testing - only the continued advice and support from this site did I go ahead and do private tests and find out I do have these and just how ill I was.

It was only the heamatologist note on my blood test showing I had PA, tyhat advised me my doc KNEW I had B12 deficiency in 2011 - his note asked why I had not been treated then.

I then asked my doc and he said they would look into why I was not treated at the time - why it had taken 3 years and my puching to find out - that was 6 motnhs ago - still no answers.

It should not be such a struggle to find these things out - but it is - so many people here have the same stories, over and over agian.

i fully support this site and their forums and hope this site will help bring an end to long term suffering, an end to patients like me blindly believing when their doc says it cannot be this or that or that they do not know - or as I have been told - you jsut have to live with the pain, there is nothing to be done, we have no idea why etc etc.

There is always an answer - we jsut have to keep on top of the medical profession to make them feel our pain and push them to find answers.

what irritates me - is time and again, for many patients here - they say "the doc says it cannot be x" but that is it - they do nto say it cannot be X, lets see if it is Y - they jsut STOP, leaving patients in pain, and as in my case, the lengthy lack of treatment has left me with nerve damage and a very small cahnce that it may be fixable, mainly it seems to be permanent - and has totally ruined my way of life.

I hope you find many answers here, and even if not answers, ideas and most ertinly support.

we are always here for you.

it may take a few days for someone to get back to you, but that is only because we are unwell, one way or another, and have our own illnessess to battle with, but please do feel at home here.

and we always welcome a funny post too - nothing like smiles to help someone feel a bit better, especially if they have a long term illness

Big Hugs,

M