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CLOU

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Joined
Mar 12, 2012
Messages
2
Reason
CALS
Diagnosis
03/2012
Country
US
State
ca
City
placerville
thx for reading. I cannot rush any diagnose of course but I sure can ask questions....

my husband (had) a raspy voice, he no longer has a voice.
he has tremors from the waist up.
new choking cough
cant tell a story.
words are starting to slur
did NOT pass neurological test...nose to docs finger. ...he missed everyone.
he says his whole body freezes.
serious fatigue
weak legs
crying alot.

its all happening so fast.

He can no longer write cursive, due to his brain cannot connect the letters...

no further tests done yet but the doc he saw said it sure looks like he has it.

do some or any of these symptoms look familiar to you?
I am still waiting for a Neuro appt...but wow he progressing quickly in a downward spiral.
I have lots to do, financially,................I need some input.thx all of you
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Not very kind of that doctor to have mentioned that he/she thought your husband has ALS. The symptoms that you've listed are quite vague and could be caused by several things (or combinations of things). The best thing for you to do is simply to wait until the neuro appointment and see what the neuro says, if anything.

And it's always smart to be financially prepared so that the death or disability of one spouse can be coped with. Good luck.
 

kmendsley

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Joined
Feb 19, 2010
Messages
431
Reason
PALS
Diagnosis
04/2011
Country
US
State
CA
City
Highland
Like Trfogey said, your symptoms are vague.

Also contradicting...you said first he had a raspy voice, and now no voice. But then later you say his words are starting to slur? Is there still a 'tone' in his voice...or whispering...or can he not move his mouth? Please be a little clearer on this.

It wasn't right for your gp to say straight out what they thought with no other tests done first. Many, many neurological diseases out there that can be treated. As for financial, always best to keep this under control whether or not someone is sick. Start planning now for whatever medical journey lies ahead. Mostly, it is too early to tell...you will need to have many more tests done. MRI of brain and spine for starters.

Good luck to you.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
The best place for you to go is Forbes Norris in San Fran. Sacramento has a place too, but if you can handle the drive, I highly recommend you go see DR's Miller and Katz.

PS We used to live in Placerville, my daughter was born there!

http://www.cpmc.org/services/als/
 

CLOU

New member
Joined
Mar 12, 2012
Messages
2
Reason
CALS
Diagnosis
03/2012
Country
US
State
ca
City
placerville
Thanks sadiemae, I have heard of doctor Katz? hmmmm. What I meant about his voice, this was his second symptom, which prompted me to get him to the doctor and his voice only worked a couple hours a day. It does turn on sometimes. When it does I noticed Sunday that he is slurring his words and fighting mentally to gather his words. We are UCD patients.
 

Alyoop

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Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
City
NZ
No Doctor should EVER mention ALS, before you've seen a neurologist and had the run of tests. Theta are just way too many things that cause problems like this. Tremors can be caused by other conditions. Not doing nose to finger does not necessarily mean weakness, could be stiffness, coordination issues etc.

You have just started on the road to diagnosis. That road could lead in all sorts of directions, not necessarily toward ALS.
I hope you both get an idea of what's going on soon. It must be very distressing for you both
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,757
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Our neurologist didn't mention ALS. Instead, he sent my husband to the ALS specialist in the area to confirm his suspitions.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Few things:

If he's coughing and having ANY kind of breathing issues--call 911 or take him to an ER. He could have pneumonia.

There are a lot of other things--ALS is kind of 'last' on the list--but a stroke is another possibility.

Losing abilities you used to have can lead to tears--but so can EL (emotional liability) All you can really do is wait. In the meantime, get things in order. If he hasn't already--see if he can get on short-term disability if working is causing stress (if he is working)

Try not to put the cart before the horse, though. It can always be something else until it can't be. Without an EMG, they just don know. You don't say how 'fast' this was--but raspy to no voice--and slurring-- I'm kind of lost. Does he or does he not have a voice?

Slurred speech can be other things too. I hope you get some answers.

Financially--once he's seen a doctor--there isn't a lot you can do but wait. Insurance can't drop him. If indeed it is ALS--or strongly suggestive of ALS--see an ALS specialist in your area. Always get a second opinion!
 

HelenL

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Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
good comments above, and I also wondered about whether it could be more of a stroke or brain injury type of thing... He needs to get an EMG to see if it does involve the motor neurons, and those can tell you damaged areas before you physically notice them. Good luck, and I pray you find out its something else.
 

CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
208
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
City
Roseville
You have received much wonderful advice. I would follow up with a neuro and also, seek a second opinion, no matter what is decided. I do believe UCD has some kind of ALS specialist. My father in law was diagnosed by them over 12 years ago. He was indigent and was seen through the free clinic, I believe.

Although your symptoms are concerning, you don't give any sort of timeline for the onset of them. Remember that with ALS, everything is ruled out before you are diagnosed. Go through the whole process and run the full scope of tests before you worry about ALS.
Wishing you all the best.
Meg
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Honestly--does this sound more like Parkinson type of symptoms? I've heard of "freezing" with it, I believe.

With ALS the speech isn't so much making the brain work--it's more the muscles themselves won't form the words. Your description sounds more like he's having brain connection issues--rather than muscle connection issues, if that makes sense.

"Finding" the words is brain. Making them come out is the muscles (which in ALS are ruined by nerve destruction)

A little more info would help.

Timeline?
Age?
What type of doctor did he see?
What tests have been done?

Your GP can order many of them that should be done before even seeing a neuro--such as bloodwork and MRIs Most neuro prefer to perform their own EMGs
 
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