Diagnosis was just as bad as ALS

LUTHER

Active member
Joined
Oct 16, 2018
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CT
City
New Haven
I came back to update after 19 months, where I wrote “ I feel so helpless”. Finally got diagnosed with Multiple System Atrophy.
My current situation is complete autonomic system failure, which is closing my breathing and at any moment, by brain can stop sending signals to breathe. It’s a cross between Parkinsons and ALS with no treatment and not test other than autopsy! It shuts down bowels, lungs, eyes, swallowing,brain, voice, muscle spasms, stiffness!
I only send this to thank all those who were patient with me in 2018 as I searched for answers!
And I also want others to know to search for other possible avenues, especially when the wonderful people here have to you No ALS!
 

KarenNWendyn

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Moderator
Joined
Jul 29, 2017
Messages
3,106
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Previous threads here:



Im sorry you got that diagnosis. Not ALS with the clean EMGs, but as you said, not good either. I hope you find some comfort in the time remaining. Thank you for updating us.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,154
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Sorry to hear this. As you point out there are many diseases that can cause worrying symptoms and asking what is wrong rather than is this is ALS is the correct approach.

thank you for returning to let everyone know. Wishing you peace and comfort
 

lgelb

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Nov 5, 2009
Messages
7,943
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Lost a loved one
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09/2009
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WA
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Seattle
Luther, do have a look at clinicaltrials.gov to see if there are clinical trials for which you might be eligible, and take advantage of resources such as the MSA Coalition. All the best.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,593
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Luther, I'm so sorry. I've read up on the disease and hope you are getting the correct medicine and care to help your quality of life.
 
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