A major problem with this illness is that physical injury is not believed. Many people leave neurologists or GPs offices with a vote of 'no injury' despite having physical problems.
The one injury I can think of though which we can prove, is that of muscle fasciculations. That is where your muscles 'jump' or 'spasm' particularly when you are at rest.
No idea how I'm going to go about doing this, but am certain that I want to do it. This is the one thing that isn't 'descriptive' of damage caused by a b12 deficiency. It isn't anything to do with mood. It isn't anything to do with gait or balance - it can't be faked.
Fasciculations are as a result of damage to the alpha motor neurons - this can't be argued with or dismissed out of hand. But, because it usually happens at rest, all we can do is tell doctors about it and hope they believe us. Which, of course, they don't (because we've only had a b12 deficiency and 'your blood levels are normal now.)
So, if anyone is interested in this way of evidencing our physical injuries please feel free to join in. Also if you can think of anything else that we could use as hard evidence - something which can't be faked - then just jot it down.
If anyone could also give me any advice on how to film my fasciculations in the easiest, cheapest and fastest way possible, please add on here. I'm thinking some kind of mobile phone?
I really don't want to have to invite someone round to wait until I try and go to sleep - plus those fasciculations are naughty and when you move they tend to stop, but I'm prepared to lay around all night if I have to.