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.
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Poppet11
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I don't know what else you have but, obviously, you have something to connect to the internet. If that is a laptop, you might find the least expensive approach is to use a simple USB webcam.
* You can view on the screen whilst recording;
* It is much easier to manipulate a small webcam than a phone;
* You are much more likely to find a friend who would loan you one than a phone. Lots of people got one free with something or other.
Advice: Whatever technique and equipment you use, try it out repeatedly until you are reliably getting acceptable quality. And lighting is critical. And take it on a tablet to the doctor with the file actually on the device. (Yes - I like the idea of giving a doctor a tablet. ) Don't assume they will be able to view it on YouTube, Flickr, Facebook, etc. - all of those might very well be blocked - and any need for *any* software on the doctor's PC will likely preclude it getting viewed.
Also, I absolutely agree, using our technology to collect evidence is an excellent approach.
I wasn't thinking of filming it to give to a doctor, I was thinking of as many of us as possible filming the damage we have been caused to show people what b12 deficiency can do. Most of us have had this damage ignored by doctors or being told it is all in our minds and never got any of it acknowledged.
I know we've also got people who could show what damage has been caused via MRIs etc after waiting good periods for a diagnosis. Brain atrophy, subacute etc.
A big issue with b12 deficiency is that most people don't understand the physical damage it causes, there is a tendency to look at it as a mood altering illness, when in fact this is only a small part of it for many people. I think it is just as important to let people know that physical injury can, and does occur, and that doctors are simply dismissing such physical injury out of hand.
Back to the webcam. Are the cables on the webcams quite short? I need to be able to film my legs quite close up while I'm laid on a bed and if the cables have a metre or so then I can put the laptop to the side of the bed. Also what does it record to - do I need special software?
I'm going to be homeless in a couple of days and in a slight panic so I'd really like to get something sorted before I don't have the opportunity anymore.
Don't worry - I understand what low B12 can do (though I am not a PA sufferer, I suspect I had low B12 for a while).
A typical webcam might have one metre cable. However, assuming it is a standard USB 2 device, you can use an extension cable to increase that to five metres.
To be honest, I don't know what is necessary in terms of software. Mostly you get a CD (or DVD) along with the webcam and that will install what is needed. Many PCs are likely to be able to identify the make and model and download basic driver software. You might be able to download other software from the manufacturer or use what comes with Windows. That is, in many cases it won't be a problem but I can't promise you won't hit something that makes it awkward.
To get going with experiments, has your laptop got its own webcam built-in? If so, start playing with that. Then by the time you get your hands on a webcam you should feel a bit more comfortable.
It's about the practical worries of living in a car - more a Human Rights concern than anything else. Little things like heat (hypothermia) and food (starvation).
No, my laptop hasn't got a built in webcam (it's very old) - although I really wish it had at the moment!
I too am greatly annoyed by the inability of others to recognize the physical manifestations of the disease. I get the sense that even my family thinks in part that I might be playing up the symptoms just because I don't want to work.
So I came to the same conclusion as you about spasms being the only visual evidence I could record myself. I usually have a digital camera with a good HD video mode nearby so I can spring for it when a spasm starts. However, at least for me, the spasms go away again quite quickly such that capturing anything can be difficult. It almost seems like just moving to get the camera and expose the skin can scare them off, too. But I have managed to capture a few extended incidences of my eyelid and leg twitching.
I have a feeling, though, that even this evidence wouldn't be substantial enough to convince many people. When I've shown the videos to my SO, she just thinks it's freaky and something everyone gets from time to time. And honestly, except when they're on your face and others can see them, the spasms aren't really that problematic--more of an annoyance, really.
You're absolutely right they do stop if you move and it is difficult to catch them - but I have spasms all over my legs (and at a certain point in my feet) every night, I figured if I sat there without covers and just waited I could catch them jumping all over the place.
Spasms can be caused by other things, but they are indicative of nerve damage and, where I get them most, to a specific area in the spinal cord.
I, also, very irritatingly get a specific spasm in one area of my back - it feels like a biggie when it goes but I haven't got a hope of filming it! And, even more annoyingly, I move to make it stop, but then it kicks off again as soon as I relax. It's like sleeping next to someone who snores!
I do get them in my arms but they are not as guaranteed as my legs.
I was also hoping to film the muscle in my leg not working and, if I was really lucky, although I suppose someone could fake it, the tremor in my legs when they are resting. Because you can actually see it now.
Wouldn't it be better if doctors actually knew about b12 deficiency and knew that if it went untreated it can result in permanent nerve damage? Patients having to prove they are ill and having to explain it to doctors, really isn't on!
That's exactly how I get when I go to bed. It's like a lightning storm of spasms, mostly in my arms and legs. But they seem to calm down eventually. Never gotten them in my feet before, though.
I recall now that about a year ago I mentioned the spasms to a doctor, and he just passed them off like some sort of common muscle reaction to over-exertion. It angers me so that they can't just take our word when we're saying something feels out of the ordinary.
But anyways, good luck to you. Maybe we can compare spasm videos if you succeed.
Thing is, it's a matter of doctors knowing what they are dealing with. You have patients who are diagnosed with an illness which may cause neurological damage. A symptom of neurological damage is muscle spasms.
Yes, exertion can cause muscle spasms. Yet you already have a patient that you have determined may have neuro damage. What would be the sensible course of action to take? Ignore it or try and mitigate the damage?
The thing is, we shouldn't even be here discussing this, all we want is for doctors to DO THEIR JOB!!!!
Totally agree with u Poppet. Why can't all doctors be retrained on b12. My doctor rang me last week as I was told off them had to have a blood test to see my levels after injections. I then got a phonecall to say they were exceedingly high which I'm not surprised about considering a couple of weeks before had 6 injections. I explained that for all feel improved I still have some pins/needles and moments of ligjtheadness I was then told well all is normal and will do repeat bloods in 2 months to see if level drops. They just not interestrd and I'm being spoken to as if I'm imagining it
Don't you sometimes feel that you just want to say, "Now, can we stop this nonsense and you stop talking as if I've got a blood condition and start looking at the neurological implications and then perhaps we will get somewhere."
I tell you something, if I'd have known 3 years ago what I know now, none of the doctors I met would have got off with the behaviour and attitude that they did.
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) Don't assume they will be able to view it on YouTube, Flickr, Facebook, etc. - all of those might very well be blocked - and any need for *any* software on the doctor's PC will likely preclude it getting viewed.
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