I was reading a post on an MS forum the other day - unfortunately I can't find it now - but it was a neurologist explaining what they were looking for and what the tests meant when people with MS or suspected MS went for an examination.
An interesting feature of the examination described was that all the tests undertaken were those with 'eyes open.' Not once did the neurologist suggest that the people with suspected MS have the same tests done with 'eyes closed.'
I'm no neurologist, but I do realise that the standard practice appears to be that many tests are undertaken to establish if the patient has motor damage (a feature of MS) with eyes open, but then tests aren't done with eyes closed to establish if patients have proprioception issues (a feature of b12 deficiency).
From the MS patients point of view it was quite interesting. Some people were 'failing' to get MS diagnosed because they completed the motor tests. Yet they weren't given the same tests to establish if there were proprioception problems (which may indicate damage resulting from a b12 deficiency).
From the perspective of b12 patients, if you get a neurological exam, you MUST make sure the neuro does both kinds of tests because in many cases they will do the motor tests as a norm, and if you pass, they will not complete with proprioception tests.
Going through my records I can give perfectly good examples here:
I have had 3 neuro exams.
In two it was found that I had poor heel/toe walking, left sided balance problems, and failed Rhombergs (amongst other things)
In one it said I had good heel/toe walking, no left sided balance problems, and passed Rhombergs.
Now, how confusing is that?
Not confusing at all really if you understand that in the first 2 exams I passed all the tests with my eyes open, but failed them with my eyes closed.
In the third exam, I only had tests done with my eyes open. Of course I was going to pass - I always do.
(Mind you, no one has ever tested my hopping which I can't do with eyes open or closed!)
So, the first two indicate I have damage to my spinal cord, the third indicates there are no spinal cord problems. But only because the neuro didn't do the correct tests!!!!
Remember - test with eyes open and closed.
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Poppet11
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I have an MS diagnosis, but am currently trying b12 with some slow success-I am trying desperately to be objective! I am really interested in your post, and the article if it ever comes back to you where it is?
I had priopreception deficits, especially in the dark, which I have always understood was a feature of MS and B 12? I say had, as have been using sublingual b12 gradually upping dose over 2 years , and in about July this year, noticed my balance gradually improving. I could never play hopscotch again, but with basic balance, my walking is much better, and less exhausting as my brain not busy working out which was is up at every step!
I can also walk heel to toe now, but at my first neuro exam, neuro asked me to do this, and I started off with a grin, humouring him, only to fall straight over!
In differentiating between Ms and b12, I have two hydromelia in spine these are not MS associated but I have read are with b12 and diffuse inflammation over all 7 segments thoracic, again MS more 1 to 2, discrete focus. But, the neuro focussed entirely on csf analysis- I had oligoclonal bands not in matching serum; after this they are not interested in discussing different causation.
I have celiac also, and there is a lot of work now on gluten ataxia, can also cause bands, and can prevent b12 absorption. How are you with gluten?
The piece that I saw was not an article but a post on a forum by a neurologist - and I wasn't even looking for that so it's probably why I can't find it again!
When it comes to b12 deficiency and MS we have many problems. Not least in that the diagnostics relating to MS are very well known and understood even by the patients.
In contrast, most people (including doctors) don't understand b12 deficiency and even if they do they only understand the basics.
You will rarely, if ever, see b12 deficient patients discussing things like MRIs or CSF in detail - because we never get these things!
The lack of understanding of the physical damage b12 deficiency does is at an extraordinary low level. In fact I'd actually use the word 'obscene' to depict that lack of knowledge.
My understanding of MS when it comes to neurological exams is that it 'usually' affects motor issues - so tests are done with eyes open.
My understanding of B12 deficiency damage when it comes to neurological exams is that it 'usually' affects proprioception issues - so tests are done with eyes closed.
That is not to say that either of them are unique to either illness - but with b12 it is known to affect pyramidal tracts and so the proprioception issues follow, although you might still have some motor problems.
The problem with neurological testing is that many neuros are 'looking' for MS - they are not looking for damage relative to a b12 deficiency. So, as in my case, a neurologist performed the tests for motor issues and when they were negative they didn't go further. Hence completely missing neurological damage.
Another problem with MS and b12 deficiency is the commonly misheld belief that if an MS patient has a deficiency then their neuro damage will be repaired once they start taking b12 - if indeed their illness was a misdiagnosis.
But they are no different to B12 deficient patients in that respect - if their damage is permanent then the b12 can only go so far in both halting the degeneration and reversing some symptoms.
Neurological damage, if permanent, is permanent neurological damage - no matter what it is caused by - and even if it was caused by a lack of b12, no matter how much is given it cannot be reversed.
Yet at the moment we have a lot of people who only had the early stages of b12 deficiency, taking b12 and getting those early symptoms reversed - which is what happens in the early stages - running about and telling everybody else how their symptoms too can be reversed. Not true. It depends on which stage the b12 deficiency was caught.
Honestly, some of them are like a bunch of schoolgirls who think they are the first people to have discovered sex and are enthusiastically telling people about it. It's rather getting on my nerves!
No, I don't have gluten intolerance - and to be honest, the whole subject would require a dissertation.
But look at it this way. If you have a malabsorption problem, then it isn't just b12 you can't absorb. However b12 deficiency is the one that causes the most neurological damage.
This subject is not just about b12 - it is about a bucket load of other stuff and is rather like unravelling a ball of string.
If I do find the link to the forum, I'll post it for you!
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