Bulbar

Status
Not open for further replies.

Kristen1994

New member
Joined
May 14, 2021
Messages
2
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
TN
City
Crossville
Hi I'm 29 and my mom died of als 5 years ago . I've been having some scary symptoms myself started off as twitching in my face now when I drink.something I feel like I somethings in my throat and also my voice is so hoarse and as of last week I went to the dentist and noticed I couldn't hold my mouth open without it causing discomfort to my jaw making it hard I'm guessing it my muscles. This is never been that way seeing that I just went to the dentist 6 months ago. My fear is bulbar I'm waiting.to see my pop but if anyone has any input of what u think that be nice thanks

Also I read ur sticky and If someone that been through bulbar could please let me know how and what u think about my symptoms greatly appreciate 🙂🙏 u
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,485
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry for your loss Kristen.
Please don't jump ahead of yourself though. I would not suspect ALS from what you have reported. Was your mum the first in your family? We would not expect you to start symptoms at such a different age than your mum was, may I ask how old she was when diagnosed?
Seeing your doctor is going to be the best thing. In the meantime, try and look after yourself and not keep looking for symptoms as that really drives a person to finding things that are probably just fine and thinking they are all related.
 

Kristen1994

New member
Joined
May 14, 2021
Messages
2
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
TN
City
Crossville
Yes she was the first that I know of she was 45 and she had foot.drop was the first thing she had noticed . I know als is really rare and bulbar is rare as well and being young is rare but also possible but boy just all these things happening at once is really scary for me and all this has been in time spand of 8 months. I'm just a mess thinking about it I'm scared to say the least . Everyone that goes through this are incredible strong and I'm sorry if u are going through it . It's such and scary thing.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,485
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I know it seems like you have a lot of things all at once, but they really are not bulbar symptoms.
With no other people in your family having ALS, the chances of you getting ALS are no higher than mine, and you would be seeing symptoms in another 15 years or so more likely if it was linked to your mum.
But the big thing is that what you report are not alarming as bulbar symptoms, so that is a good thing. An exam by your doctor is going to be the important thing now. Hold off until you have seen a doctor, then let us know what they say.
If you can't control the fear, ask for an urgent appointment to address that. You shouldn't just suffer when help can be given at least on that side of things.
 
Status
Not open for further replies.
Top