Status
Not open for further replies.

Camrush88

New member
Joined
Jan 3, 2016
Messages
8
Reason
Other
Country
US
State
Florida
Hello everyone I need your expert opinions on symptoms I have been having starting about a year or so ago I developed fasculations all over for no reason and breathing problems that seem to be getting worse when I'm on my back. Starting a few months ago I started getting muscle fatigue in my face tongue and under my chin it's like a burning fatigue when I smile or anything and when I talk my voice is real strained sounding My jaws and tongue tire out when eating and it's getting hard to hold my head I get that burning fatigue in my neck just trying to hold it up. I also get cramps in various places palm of hands feet and thighs. I also suffer with brain fog can't think straight and get confused easily. I've read the shortness of breath could be apart of bulbar. I've had loads of tests done from my doctor and neurologist ct scan of brain mri of brain mri of c-spine emg on one leg (I heard if it was bulbar it usually won't pick it up if done elsewhere). Everything is just getting harder to do can't talk without slurring no one has said I've sounded drunk or anything but I've been asked to repeat myself numerous times. My question is this can you have burning fatigue before total loss of function of a muscle? Does this sound like ALS? Thank you in advance I know you guys are the most experienced in this so hopefully you give done insight
 

Camrush88

New member
Joined
Jan 3, 2016
Messages
8
Reason
Other
Country
US
State
Florida
Sorry at the end I meant to say hopefully you guys can give me some insight and I'm a 27 year old male
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,173
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
No. In ALS, the muscle weakens and becomes paralyzed, limp and useless WITHOUT pain or any other feeling.

This doesn't sound like any ALS I ever heard of. Please read the sticky post at the top of this subforum titled "New Members: Read this..."
 

Camrush88

New member
Joined
Jan 3, 2016
Messages
8
Reason
Other
Country
US
State
Florida
Thanks Atsugi I'm just concerned because I've read a lot of PALS presenting fatigue before actual paralysis of a muscle. So you really don't think this could be bulbar though with the strained talking and fatigue in tongue and jaws and shortness of breath? Or maybe the the respitory onset type? From what I've read the respitory type would cause the burning muscle fatigue
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,523
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Please read the sticky. It is our official position and it took a lot of time and effort to create. We don't deviate from anything in there as we know ALS well. You can read loads of stuff anywhere else, but that is your anxiety taking over.

My husband had bulbar onset.

I hope you can work with your doctors to solve whatever is going on.


Tillie
 

Camrush88

New member
Joined
Jan 3, 2016
Messages
8
Reason
Other
Country
US
State
Florida
I don't see anything about respitory onset on the stickies at all though is there anyone here who has it that can tell me how it started for them
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,523
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
hon you don't have respiratory onset ALS.

Please understand, any of our PALS who do, well they just don't have the energy to type in this section of the forum. ALS is rare, and respiratory onset is the rarest of the rare.

I hope that you can sort this out soon with your doctors. I know it's hard to be patient but they will work at solving it all.
 

Camrush88

New member
Joined
Jan 3, 2016
Messages
8
Reason
Other
Country
US
State
Florida
Thanks so much for the replies I had a lung breathing test from my regular doctor and he said it showed restriction and he is baffled to why it is because my heart and lungs are ok how would I even go about getting my breathing muscles checked wouldn't I have to get the breathing test done while I'm lying down also? I've read a couple of respitory onset here and they do closely resemble my symptoms when I lie down it feels like a weight is on my rib cage and I get that burning fatigue feeling also in my ribs.
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,173
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Ask your doctor to refer you to a pulmonologist.
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,173
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
You've been told several times by two experienced people that your symptoms do NOT sound like ALS. And your neurologist did not see ALS on the EMG. Time to let your GP guide your health investigation, not a bunch of people on the Internet who have never examined you.
 

Camrush88

New member
Joined
Jan 3, 2016
Messages
8
Reason
Other
Country
US
State
Florida
Thanks for the responses I'm really grateful one last thing I forgot to mention is its getting harder to do things with my left mostly thumb and pointer finger I'm a avid gamer so I use my fingers a lot but my thumb and pointer finger are getting weaker and I've noticed some atrophy in my thenar I think it's called?
 

Camrush88

New member
Joined
Jan 3, 2016
Messages
8
Reason
Other
Country
US
State
Florida
And it constantly twitches there I can't feel them but I can see them 24/7
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,243
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
If you are not stroud/ anxiousguy etc. you guys should get together. Not sounding like ALS please leave
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock
No Thanks