Swimmer7
Member
- Joined
- Aug 5, 2014
- Messages
- 13
- Reason
- Learn about ALS
- Country
- IRE
- State
- Dublin
- City
- Dublin
Hey All,
I know the stickies are there to help alleviate fears from the worried well and to ensure that those who really need the support on this forum receive it. However, I think some of the blanket reassurances of the stickies can be misplaced (not maliciously of course).
For example, when commenting on the difference between clinical and perceived weakness- many use the example that a limb simply won't work - falling over your affected leg etc. But there's an initial stage of the illness where surely you have a weakness or a change in the dexterity of the limb that gradually gets worse, right? You don't suddenly have a limb that isn't working, it just gets to the point where it doesn't work and that's when you seek help? So therefore you could conclude that an observant patient would note the mild change in strength or movement and bring that to medical attention before there are clinical signs. Am I incorrect in suggesting this?
Also, I had an EMG/NCS last week, as I have been having cramps in my leg muscles/stiffness/feeling of dislocation/delayed response from the limb and the EMG was clean. I breathed a sigh of relief and said 'well that's great, the symptoms aren't caused by MND/ALS so, cos the EMG was clean?' My conclusion was based on the threads here telling me that the EMG is a 'Gold Standard' and if it's clean you don't have MND/ALS. The consultant disagreed and said that while she wasn't worried about me right now, you could still be symptomatic with MND/ALS and not show on your EMG yet. It is a degenerating illness, so surely she's right?
Anyway, I'm not initiating a debate between those diagnosed and those awaiting (any) diagnosis, just suggesting that some of the stickies can be dismissive for those who might well have MND/ALS.
Now that I've written this, I'm not sure how helpful it is, but if it occurred to me, it must have occurred to others.
I wish you all well.
Swimmer7
I know the stickies are there to help alleviate fears from the worried well and to ensure that those who really need the support on this forum receive it. However, I think some of the blanket reassurances of the stickies can be misplaced (not maliciously of course).
For example, when commenting on the difference between clinical and perceived weakness- many use the example that a limb simply won't work - falling over your affected leg etc. But there's an initial stage of the illness where surely you have a weakness or a change in the dexterity of the limb that gradually gets worse, right? You don't suddenly have a limb that isn't working, it just gets to the point where it doesn't work and that's when you seek help? So therefore you could conclude that an observant patient would note the mild change in strength or movement and bring that to medical attention before there are clinical signs. Am I incorrect in suggesting this?
Also, I had an EMG/NCS last week, as I have been having cramps in my leg muscles/stiffness/feeling of dislocation/delayed response from the limb and the EMG was clean. I breathed a sigh of relief and said 'well that's great, the symptoms aren't caused by MND/ALS so, cos the EMG was clean?' My conclusion was based on the threads here telling me that the EMG is a 'Gold Standard' and if it's clean you don't have MND/ALS. The consultant disagreed and said that while she wasn't worried about me right now, you could still be symptomatic with MND/ALS and not show on your EMG yet. It is a degenerating illness, so surely she's right?
Anyway, I'm not initiating a debate between those diagnosed and those awaiting (any) diagnosis, just suggesting that some of the stickies can be dismissive for those who might well have MND/ALS.
Now that I've written this, I'm not sure how helpful it is, but if it occurred to me, it must have occurred to others.
I wish you all well.
Swimmer7