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starente15

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Hi everyone. I've been working my way back to the board slowly. Not sure why I feel the need to chime in, but here goes.

My father never had anxiety before being diagnosed with ALS. As weird symptoms started to occur over the course of a year, i.e., head dropping, voice changing, choking, unable to sleep lying down, etc. never once did anyone come to the conclusion it was ALS.

He saw a chiropractor for this neck, an ENT for his voice and his primary for weight loss. Not one person saw the connection.

Eventually, he had to go to the hospital because he was falling asleep in random places from CO2 buildup, i.e., the car in the driveway. Still no thought of ALS.

The doctors thought a heart attack, pneumonia; we thought worst case scenario: lung cancer.

Only when a neuro came in and pieced the symptoms together was it suspected. We STILL refused to believe it could be ALS until two days later when it was positively confirmed through EMG and other testing.

If you've seen multiple neuro's who say it's not ALS and had multiple negative EMG's, chances are you're one of the lucky ones. You do not have ALS.

Anxiety is a terrible thing. I have it myself. My observation is that most people who come to this page admit to having anxiety about their health. They've fueled the fire by Googling symptoms and convinced themselves they have ALS. They look closely for any little symptom that 'might' be related.

My father's symptoms were very apparent. His physical appearance changed drastically over six months. He stopped doing things he had always done. He started eating softer foods. All the while, he never told anyone that things were happening.

All of the visible symptoms could be explained. Neck drop? He said his back and neck were bothering him from working. Voice change? ENT said his vocal chords were thinning due to age (I still say, 'huh?' to that one), weight loss? He changed his diet. Only in hindsight could we now see something was wrong.

It seems inconsiderate to use this page as a forum to get people who have the disease or have cared for someone with it to convince you that you don't have it. Then once they provide feedback, continue to press for more confirmation.

Addressing anxiety issues should be the priority so you can live your best life possible. There's enough bad news in the world that we don't need to seek it out. Enjoy the life you have, find a way not to worry about what you can't control (counseling, medication, yoga, meditation) and enjoy the health you're currently experiencing. Many are not as fortunate.

No one ever wants to hear "You have ALS." For those who have received positive confirmation, I am truly sorry. I know what it means for them and their loved ones.

For those who "think" they might have it, trust your doctors, trust your test results and be thankful that you don't.
 
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gooseberry

Extremely helpful member
Joined
Jul 2, 2014
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3,457
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Right on Star. Steves cardiologist thought it was a mnd because his uncle had als. Pcp, pulmo didnt think much of it. Neuro looked at him, did a history and exam and suspected. Many blood tests , scans, and emg later ut was confirmed
 

AP1981

Active member
Joined
Nov 17, 2015
Messages
38
Reason
PALS
Diagnosis
04/2015
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AUS
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Perth
Well said.

I want to add for people who think they have bulbar onset: if your neuro says you don't have it. You don't have it. Trust me that if it is bulbar, other people will notice and ask if you are drunk or have had a stroke.

The physician i saw first did an mri and blood test to rule out stroke, ms and mg. The neuro knew i had mnd instantly. We did an emg on my legs just to be sure and it confirmed mnd.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Thank you Star, so many of these people act like they want it not just that they are anxious about it. They DO need to trust there doctors while advocating for themselves. If they believe something is wrong then keep pushing until you get an answere.
 

starente15

Senior member
Joined
Oct 27, 2014
Messages
807
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
I agree Pete. I don't think they get how offensive it is to take the time of PALS and CALS to basically be told they might have a sinus infection or anxiety. The reach is so great it's hard for me to comprehend. I equate it to going to a cancer support group because I have a headache.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
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US
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PA
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Lancaster
I could not agree more!
 
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