Debevs
New member
- Joined
- Feb 2, 2021
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 00/0000
- Country
- UK
- City
- london
Hi all,
I really hope I'm posting in the right place and I'd be so grateful for any advice.
My mum is being investigated for Motor Neurones Disease (assumed by neurologist) having experienced progressive weakness on one side, atrophy, fasciculations. Symptoms onset last year. Crucially, her sibling died of ALS. Other than that no other family history. One of her parents still alive in 90s, the other died aged 86.
Blood tests showed muscle damage and the Neurologist has said he "assumes" MND based on physical examination (demonstrable weakness, visible atrophy and twitching), but a recent EMG has just come back "clear" so won't confirm a diagnosis. We've been told we must wait for three months before redoing it to see if it's changed. It feels so hard to remain in limbo without a formal diagnosis so not able to look into e.g. clinical trials but being told by doctors to expect the worst.
Does anyone have any advice or experience of this? I'm not even sure if we are asking the right questions at the moment. The fear of FALS is also playing on my mind, although my primary worry is for her right now.
So grateful for any insights.
I really hope I'm posting in the right place and I'd be so grateful for any advice.
My mum is being investigated for Motor Neurones Disease (assumed by neurologist) having experienced progressive weakness on one side, atrophy, fasciculations. Symptoms onset last year. Crucially, her sibling died of ALS. Other than that no other family history. One of her parents still alive in 90s, the other died aged 86.
Blood tests showed muscle damage and the Neurologist has said he "assumes" MND based on physical examination (demonstrable weakness, visible atrophy and twitching), but a recent EMG has just come back "clear" so won't confirm a diagnosis. We've been told we must wait for three months before redoing it to see if it's changed. It feels so hard to remain in limbo without a formal diagnosis so not able to look into e.g. clinical trials but being told by doctors to expect the worst.
Does anyone have any advice or experience of this? I'm not even sure if we are asking the right questions at the moment. The fear of FALS is also playing on my mind, although my primary worry is for her right now.
So grateful for any insights.