Neutrino
Member
- Joined
- Jul 16, 2021
- Messages
- 16
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hi! Whilst im waiting to be admitted back to hospital, i do have a question.
Just on the planning side of things really. Assuming it does turn out as one of the MND's.
So in 9 months i have gone from healthy, to bout a 30% loss of muscle mass/widespread atrophy in arms and legs (more in some areas, less in others, but legs are more affected than arms at the moment). In the last 6 weeks i have lost the ability to stand on heels or toes. In the past couple of weeks i now cant use a fork (index finger cant put any pressure on a fork to position it), and opening bottles/caps is near impossible. The fasciculations are also in a orderly fashion working their way up my legs, and increasing in frequency. Foot inversion has increased, and i now walk with a limp, plus toes are curling downwards permanently on both sides.
So the question is, im wondering what peoples experience of this kind of progression is. Linear, exponential, up and down? As even if linear, id look at the above, and assume in another 9 months (or even less) id be struggling to walk/hold my own weight up, and hands a fair bit more worse off than they are now.
I will of course put the same question to the consultants in a few weeks, and im sure once any diagnosis is made, the occupational therapists will be available. But would be good to get jist if this is the normal kind of speed it goes at, and i should be expecting to be not so mobile in another 9 months.
Just on the planning side of things really. Assuming it does turn out as one of the MND's.
So in 9 months i have gone from healthy, to bout a 30% loss of muscle mass/widespread atrophy in arms and legs (more in some areas, less in others, but legs are more affected than arms at the moment). In the last 6 weeks i have lost the ability to stand on heels or toes. In the past couple of weeks i now cant use a fork (index finger cant put any pressure on a fork to position it), and opening bottles/caps is near impossible. The fasciculations are also in a orderly fashion working their way up my legs, and increasing in frequency. Foot inversion has increased, and i now walk with a limp, plus toes are curling downwards permanently on both sides.
So the question is, im wondering what peoples experience of this kind of progression is. Linear, exponential, up and down? As even if linear, id look at the above, and assume in another 9 months (or even less) id be struggling to walk/hold my own weight up, and hands a fair bit more worse off than they are now.
I will of course put the same question to the consultants in a few weeks, and im sure once any diagnosis is made, the occupational therapists will be available. But would be good to get jist if this is the normal kind of speed it goes at, and i should be expecting to be not so mobile in another 9 months.