confused
New member
- Joined
- Apr 18, 2006
- Messages
- 3
- Reason
- PALS
- Country
- CA
- State
- Quebec
- City
- Pierrefonds
Hi,
We are a family of 9. 3 girls and 6 boys - I am the youngest at 45.
1 year ago 2 of my brothers came down with very similiar problems.
One brother's doctor says 'Scinocerrebellum Ataxia' and has initiated DNA testing.
The other's doctor says 'ALS'.
Both of their symtoms are progressing extremely fast.
Brother 1 symptoms - age 57
-extreme slurred speech
-balance unsteady
-swallowing difficulty
-great difficulty going up or down stairs
-extremely sensitive feet
amongst others
Still manages to walk unaided - refuses to rely on aids.
Brother 2 symptoms - age 59
-balance unsteady (fell from sneezing)
-extreme muscle weakness in whole body
-great difficulty going up or down stairs
-extremely sensitive feet
-strenuous breathing - at times
amongst others
Unable to walk unaided - uses walker and sometimes wheelchair.
They have both seen several doctors and visited each others doctors. Still no diagnosis!
Has anyone out there experienced this within their family. Is it possible that ALS can affect 2 members at the same time? Or is it more likely to be scinocerrebelum ataxia? Anyone have experience with this?
We are desperate for answers. The DNA testing will only be completed in approx. 5 months! In the meantime I am so afraid they will fall and hurt themselves. I am also worried about the future as Brother 2 is now living with me. What about the rest of the family - are half of us destined for the same fate? If it is not ALS - should we all get the DNA testing if that turns out positive?
Scared and sad.
We are a family of 9. 3 girls and 6 boys - I am the youngest at 45.
1 year ago 2 of my brothers came down with very similiar problems.
One brother's doctor says 'Scinocerrebellum Ataxia' and has initiated DNA testing.
The other's doctor says 'ALS'.
Both of their symtoms are progressing extremely fast.
Brother 1 symptoms - age 57
-extreme slurred speech
-balance unsteady
-swallowing difficulty
-great difficulty going up or down stairs
-extremely sensitive feet
amongst others
Still manages to walk unaided - refuses to rely on aids.
Brother 2 symptoms - age 59
-balance unsteady (fell from sneezing)
-extreme muscle weakness in whole body
-great difficulty going up or down stairs
-extremely sensitive feet
-strenuous breathing - at times
amongst others
Unable to walk unaided - uses walker and sometimes wheelchair.
They have both seen several doctors and visited each others doctors. Still no diagnosis!
Has anyone out there experienced this within their family. Is it possible that ALS can affect 2 members at the same time? Or is it more likely to be scinocerrebelum ataxia? Anyone have experience with this?
We are desperate for answers. The DNA testing will only be completed in approx. 5 months! In the meantime I am so afraid they will fall and hurt themselves. I am also worried about the future as Brother 2 is now living with me. What about the rest of the family - are half of us destined for the same fate? If it is not ALS - should we all get the DNA testing if that turns out positive?
Scared and sad.