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mommasgirl

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First of all I would like to say I have been a lurker here for a few months now. I want you to know my thoughts prayers go out to all of you diagnosed and your families. I have been in tears many times reading the stories of courage on this board.

I am searching for some advise. My Mom has not been confirmed with ALS, but it is still an option as they have not ruled it out yet.

In December she became ill with an upper respiratory infection that lingered for three months. In March she started having difficulty enunciating her words, couldn't whistle and started dribbling liquid when drinking. The first thought was stroke, but MRI and CT's ruled that out. She now has worsening symptoms including thickened saliva, her jaw locks at times, she aspirates and cannot speak almost at all. She has lost 30 lbs to date with fatigue and limb weakness as well.

They have stated it could be ALS and have done an EMG, but not of her tongue or cheek. They also mentioned nerve damage, but cannot find a source.

She is scheduled for testing at the university later this month that I plan to attend with her.

I am wondering what questions I should ask, what tests should be done etc as she has asked me to be her advocate. I live out of state and I am sure I am missing some info and this has been a difficult time not knowing what all has been done since she cannot tell me.

Thank you for your time and reading my post.
 

brooksea

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This is from our local ALSA page re: diagnosing ALS. It may be helpful.

"A comprehensive diagnostic workup includes most, if not all, of the following procedures:

electrodiagnostic tests including electomyography (EMG) and nerve conduction velocity (NCV)
blood and urine studies including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24 hour urine collection for heavy metals
spinal tap
x-rays, including magnetic resonance imaging (MRI)
myelogram of cervical spine
muscle and/or nerve biopsy
thorough neurological examination

These tests are done at the discretion of the physician, usually based on the results of other diagnostic tests and the physical examination."

Good luck!
 

mommasgirl

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Thank you for the reply. As with everyone else who posts here, it is greatly appreciated.
She lives in an area where there are not allot of medical resources, so this will be a great opportunity to get to the bottom of it and receive the care she deserves.

I came to this forum due to the previous opinion that it could be ALS from her Neurologist, my denial is what has kept me away for so long.

I will keep you posted as to the what happens, at least for others sake and knowledge.

Again, I will continue to pray for each and everyone of you. Even if it turns out not to be ALS, I will be a lifetime supporter and advocate for this illness.

Your stories have touched me in a way I could never have imagined.

Thank you
 

kmendsley

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Joined
Feb 19, 2010
Messages
434
Reason
PALS
Diagnosis
04/2011
Country
US
State
CA
City
Highland
I'm sorry about your mom. You will definately be supported here in whatever diagnosis it turns out to be. brooksea summarized very nicely what tests you may need. Be the advocate for your mom...fight until you find an answer! Thanks for being a supporter for us as well!
 

mommasgirl

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Re: Mom going in for testing UPDATE

So it was confirmed today. She has ALS.
 

brooksea

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I'm so very sorry.

I hope we will be able to provide any support you and your family may need in this journey.

Sending you hugs!
 
Last edited:

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
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MA
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mommasgirl, I'm so sorry for your Mom's diagnosis. Please keep coming here for anything you need... Also sending you a hug and a good cry.
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
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1,847
Reason
PALS
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CO
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Colorado
I'm so sorry for your Mom's diagnosis Sweets. Let us know if we can help in any way.
 

notme

Extremely helpful member
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Apr 3, 2011
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PALS
Diagnosis
08/2011
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Orlando
I'm so sorry for her diagnosis. Be sure to get in touch with the ALSA in her state or the MDA if there is no ALS chapter. Her care will be best performed by an ALS clinic--as they are multi-disciplinary and know of the specific needs of those with ALS.

As always--ask any questions you or your mom have. The PALS and CALS here are just wonderful and will support you however they can.

My prayers are with your family.
 

Lobster

Distinguished member
Joined
Jul 18, 2011
Messages
137
Reason
PALS
Diagnosis
01/2007
Country
US
State
Virginia
City
Near DC
Re: Mom going in for testing UPDATE

So it was confirmed today. She has ALS.

I am very sorry to hear this. I hope she will be able to get good follow-up care at an ALS clinic.

At first I thought it didn't matter where I went for follow-up care because there is no treatment or cure. However, I have found that my ALS clinic has a wealth of experience; they have made so many things easier for me because they have seen so many people tread (roll?) the same path. When I have needed multiple copies of paperwork or doctors statements or equipment, they have helped me with all the hurdles.

I wish you the best of luck and I wish your mother a very slow progression.
 

joni51

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Joined
Sep 8, 2010
Messages
992
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
I am very sorry that your mom got this diagnosis. Just know that our forum family, including you now, will be here to help you in whatever way we can. Hugs to you!
 

llwlpn

Active member
Joined
Feb 16, 2011
Messages
63
Reason
PALS
Diagnosis
07/2011
Country
Uni
State
AZ
City
Show Low
I'm so sorry about your mom's diagnosis. (((Hugs)))
 

mommasgirl

New member
Joined
Jul 17, 2011
Messages
9
Reason
Loved one DX
Country
US
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Ca
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Roseville
Thank you all for your support. She will be getting treatment and care from the university of Washington ALS clinic. I am sure I will be posting on some of the other sections soon. I live in California, so being so far away from her will be very difficult for me. I saved some voice mails from her so I can hear her voice when I miss her.

I drove up to take her to the clinic on Wednesday and I have to leave tomorrow. We spent the day at the beach with my dad, sister and our daughters. It was great mother daughter time and beautiful weather for Washington state.

The hardest part will be not being able to talk to her since her speech is nearly diminished. I showed her how to text and she promised to email me at least once a week. I am planning to fly up every other month for now and more often when the time comes.

I am just still in shock. Prior to March she was fine besides her cough.

Again, thank you all so much.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
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Orlando
HI

Be sure they help her with some software she can use to communicate sooner rather than later. Window's platform has a lot of options available either free or very low cost.

Many of the ALS chapters have loaner closets that can help with equipment and counselors that can help with support.
 

sya15

Active member
Joined
Jul 22, 2011
Messages
80
Reason
Friend was DX
Country
US
State
ct
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middletown
I'm very sorry for your mom's diagnosis. My thoughts are with you!
 
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