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confused

New member
Joined
Apr 18, 2006
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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.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello confused. So sorry that you have to be here. I hate to be the bearer of bad news but it is possible for 2 family members to have ALS at the same time. I know a brother and sister that have familial ALS and they are younger than your brothers. Unfortuantely he has passed away but his sister is doing quite well. Thay have also had other members in the family that had it. There are even about 10 cases documented worldwide where the husband and wife contracted it. It is not familial in their cases. It is bad enough living with just one loved one with this and having 2 at the same time just seems so unreal. Keep up hope that it will be something else. Feel free to look here for support. We do care.
 

Meg1

Distinguished member
Joined
Jul 5, 2005
Messages
118
The only way your brothers could have familial ALS is if one of their parents had it. Familial ALS is an autosomal dominant illness and the gene will be expressed if it is present. If both parents lived to ripe old ages without similar symptoms, it is highly unlikely that familial ALS is the problem. It is entirely possible, 'tho unlikely, that each brother came down with sporadic ALS at roughly the same time. Since we don't know what causes ALS, it's possible that the triggering event (a toxin, perhaps) affected both brothers at the same time. That said, I would think some sort of genetic myopathy could also be a possibility, although the rapid progression makes that diagnosis less likely. You can read about myopathies here:

http://www.mdausa.org/publications/mitochondrial_myopathies.html#doesit

IMO, the only way to get a sure answer to the ALS question is for your brothers to be evaluated at an ALS center. General neurologists just don't see enough ALS to make a reliable diagnosis.
 
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