Bulbar diagnosis June 2021

gracey35

New member
Joined
Jun 22, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
MI
City
Waterford
I am 58 year old female who has been diagnosed with bulbar onset ALS. The kicker is that my husband of 30 years passed away from ALS in 2014. What are the odds of that.
 

Nikki J

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Mar 22, 2012
Messages
10,988
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am very sorry. Conjugal ( marital) ALS is rare but not unheard of as I expect you were told. As you have gone down this road before you have ,unfortunately, an idea of your path though every PALS is different. Even in FALS families like mine people present and progress differently. I am sure you knew to go to a neuromuscular neurologist and to get a second opinion
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
147
Reason
CALS
Diagnosis
07/2019
Country
US
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WA
City
Seattle
I'm so sorry to welcome you here. It is incredibly unfair that both you and your husband would have ALS.
 

gracey35

New member
Joined
Jun 22, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
MI
City
Waterford
I went to the University of Michigan. That is where he was treated. His stated in his hands first. He lived with ALS for about 12 years after diagnoses.
 

gracey35

New member
Joined
Jun 22, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
MI
City
Waterford
I have no other symptoms but speech for almost a year now. I am greatful but I put alot on hold because of this bulbar diagnosis
 

gracey35

New member
Joined
Jun 22, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
MI
City
Waterford
I have a question about yawning. It seems when I do yawn, my jaw seems to pull to the right causing my teeth to grind. And at night my jaw clenches.
 

affected

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Joined
Apr 26, 2013
Messages
13,767
Reason
Lost a loved one
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lala land
Hi gracey, yes yawning can be hard as the muscles weaken around the facial structures, and they don't weaken evenly.
You might find a mouth guard made to fit you could help at night.

My husband was bulbar onset and he had a lot of spasticity so he had both the weakening of muscles, but also a lot of muscle tension so that clenching and grinding was awful for quite a while.
 

suziQ

New member
Joined
Oct 30, 2021
Messages
2
Reason
PALS
Diagnosis
10/2021
Country
US
State
MI
sorry to hear of your diagnosis Gracey, and the loss of your husband. i was diagnosed in October with Bulbar onset ALS. Got a second opinion at University of Michigan. I too yawn wierd and have found my grinding/clenching has gotten worse. my mouth guard helps but my jaw usually hurts on one side during the day.
 
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