Raina
Member
- Joined
- Jan 7, 2007
- Messages
- 12
- Reason
- PALS
- Country
- AU
- State
- Western Australia
- City
- Bunbury
Hi,
First, thanks for the Forum. I have spent a while over the last few months checking out the posts here. This is a very useful site, I have spent 3 years trawling the net for info.
We are interested in talking to anyone who has similar symptoms to my hubby Dave.
Dave has an undiagnosed upper motor neurone disorder. He first started loosing his speech in Dec 2003 and is slowly progressing. Speech is pretty bad most of the time, although he does have some better days than others (a lot depends on fatigue) and has plateaued a few times. We will be looking at assisted speech devices in the next year or so I think.
Other symptoms are; dysphagia (swallowing problems), frequent aspirations and emotional lability, and also a slow blink reflex.
Dave has no other symptoms, is fine and strong everywhere else in his body.
EMG on Thursday just gone was clean. Our neuro (we have had 3 opinions, all telling us the same) is telling us that we may never have a diagnosis and it could be one of 6 or 7 things, none of which he will tell us until Dave has other symptoms. This is fine, we understand after 3 years of no diagnosis that if we are given the wrong diagnosis it could cause a lot of unnecessary distress. We are aware the EMG was checking for lower motor (and possible ALS) involvement - thank god, none at the moment!
Anyone out there going through the same sort of thing? We would be really interested to talk to you.
Have a great day to all you people who frequent this board, keep smiling and stay strong.
Raina
First, thanks for the Forum. I have spent a while over the last few months checking out the posts here. This is a very useful site, I have spent 3 years trawling the net for info.
We are interested in talking to anyone who has similar symptoms to my hubby Dave.
Dave has an undiagnosed upper motor neurone disorder. He first started loosing his speech in Dec 2003 and is slowly progressing. Speech is pretty bad most of the time, although he does have some better days than others (a lot depends on fatigue) and has plateaued a few times. We will be looking at assisted speech devices in the next year or so I think.
Other symptoms are; dysphagia (swallowing problems), frequent aspirations and emotional lability, and also a slow blink reflex.
Dave has no other symptoms, is fine and strong everywhere else in his body.
EMG on Thursday just gone was clean. Our neuro (we have had 3 opinions, all telling us the same) is telling us that we may never have a diagnosis and it could be one of 6 or 7 things, none of which he will tell us until Dave has other symptoms. This is fine, we understand after 3 years of no diagnosis that if we are given the wrong diagnosis it could cause a lot of unnecessary distress. We are aware the EMG was checking for lower motor (and possible ALS) involvement - thank god, none at the moment!
Anyone out there going through the same sort of thing? We would be really interested to talk to you.
Have a great day to all you people who frequent this board, keep smiling and stay strong.
Raina