Sidney
Active member
- Joined
- Jan 9, 2016
- Messages
- 98
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- LO
- City
- London
Hi.Firstly thank you in advance for your time.I'm aware that people I'm asking advice from are already dealing with this disease which is why I've stayed away from this forum.
My story is I presented with widespread calf fasiculations,weight loss,muscle wastage and have now have now had clinical exams ,bloods and EMG's from two reputable Neuro's at MND centres in the UK.Both have diagnosed BFS which I should be cock a hoop about.However I didn't really mention to either my voice cracking and shortness of breath/waking up at night and the feeling that an elephant is sitting on my chest.My fault and very dumb.
My fasiculations have now spread to all over my body and shortness of breath is worse.Would the EMG and clinical have picked up any of this?
I rang back the Neuros and they said the breathlessness would be such that I couldn't talk.Would this be correct in the early stages?
The obvious advice I know is just listen to the Neuros which is hard when you're having trouble breathing and twitching all over.
Could someone advise please?
My story is I presented with widespread calf fasiculations,weight loss,muscle wastage and have now have now had clinical exams ,bloods and EMG's from two reputable Neuro's at MND centres in the UK.Both have diagnosed BFS which I should be cock a hoop about.However I didn't really mention to either my voice cracking and shortness of breath/waking up at night and the feeling that an elephant is sitting on my chest.My fault and very dumb.
My fasiculations have now spread to all over my body and shortness of breath is worse.Would the EMG and clinical have picked up any of this?
I rang back the Neuros and they said the breathlessness would be such that I couldn't talk.Would this be correct in the early stages?
The obvious advice I know is just listen to the Neuros which is hard when you're having trouble breathing and twitching all over.
Could someone advise please?