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witzz

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Joined
Dec 6, 2007
Messages
19
Reason
Loved one DX
Diagnosis
06/2007
Country
US
State
NY
City
New York City
Hi all,

Thanks for your support these past months. My mother died of ALS in February 2008 and I miss her like crazy. It's good to know that there are people out there who understand.

I'm writing today because I have a friend who's been having symptoms that scream "ALS!" to me. It started out that she was having problems with her voice, and also with breathing. She went to an ENT and they didn't know what was wrong with her. They recommended a neurologist, who also looked at her and couldn't figure it out. Some months later, she fell while exercising. Her leg just gave out. Some time after that, she was getting out of a car and dropped her purse. Now she says she's having trouble writing and doing things with her hands, that her "fingers don't work." Her voice comes and goes and she still has problems breathing.

I listened to her and did everything short of grabbing her and saying "you must see a motor neuron specialist NOW!" But I suspect that ALS could be a possibility for her and I know that the diagnosis is hard, but it comes with a lot of help and services.

But I guess what I'm wondering is, how do I KNOW she has ALS? Am I just finding it under every rock because of my mom? And even if she does, how hard should I press her to go see someone who's knowledgeable about this stuff?

What would you do in this situation?

Thanks so much,

Witzz
 

califsand

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Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
State
ca
City
sant barbara
I would encourage her to go see the specialist. You can do that without freaking her out ... maybe suggest that her symptoms sound like it could be motor nueron and a specialist may be able to get to the bottom of things? The sooner she has an answer to what is going on, and it may NOT be ALS, the sooner she can live her life. The worry and fear caused by uncertainty are debilitating. If she has a treatable problem, they may be able to find it before it takes over her life. If it isn't treatable, and is ALS or related, the sooner she knows the better. That's my opinion anyways. I wouldn't suggest to her that she could have ALS though, she'll research it and freak herself out. Let her know you have seen similar symptoms and that in your experience the specialist most qualified was this type.
 

CindyM

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Learn about ALS
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New England
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Anytown
I don't think you need to freak her out, either. As you well know from your own Mom's experience, MND is different from something like cancer, for example, which needs immediate treatment before it grows.

I would just tell her that neurology is a very difficult science and sometimes a larger clinic associated with a teaching hospital can do a more complete work-up, thus they might provide answers sooner.

I am sure she knows on some level that something is not right. JMO, Cindy
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
How close is this friend? Did she see your mom during her illness? If you do suggest a second opinion is she going to freak? Does she have a husband or sibling you know that could bounce it off her after you mention it to them? If she knew your mom well, she may already think the worst and is not ready to deal with it. You're in a difficult spot. Good luck with whichever route you take.

AL.
 
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