Could this be ALS

[Mamabear1792]

Hi I have posted before. But my symptoms have progressed a lot. I have muscle weakness essentially everywhere . With twitching. Muscle wasting and I have split hand sign I read that is the physical early signs of ALS. I was seen by ENT doctor yesterday who said I had mild twitching in my tongue and they did the little camera test that go in ur throat and said in side of my throat is swelling and so is my vocal cords. I’m not for sure if that’s anything do to with ALS but they was concerned bout the tongue twitching. It feels weird when I talk like my tongue doesn’t move right no I haven’t slurred yet but twitching starts before slurred voice right. ? Plus if you look on my past posts I’m still having diaphragm weakness hard to breathe feel tight there I’m scheduled for camera scope test down my stomach to check for problems with breathing. But this is clearly leading to ALS possibly respiratory bulbar onset ? My emg of right arm n leg was normal but would that rule out respiratory onset since they didn’t check the tongue are diaphragm? I’m sorry for long post thanks for ur time.

 

[affected]

Can you try and remember to use basic formatting when you post.
I can't read this, let alone our PALS that are using their eyes to operate their equipment.

Talk honestly with your doctor again, you have been cleared of ALS. Coming back here instead of seeing a doctor is not helpful for anyone. Please do yourself a favour and seek medical examination and advice.

 

[lgelb]

"Weakness essentially everywhere" is not the way ALS presents. I'm glad you're getting help for your throat. Not sure what an endoscopy has to do with breathing, but they may be checking to see if the valves that help food go down are working correctly, among other things, which could affect your throat if not.

You cannot assess your own muscle atrophy, it is pointless to look for specific signs on your own, etc.

Nor is it true that "this is clearly leading to ALS" given a normal EMG, despite their not checking the bulbar region at that time. ALS does not lead to vocal cord swelling. It's not an inflammation. It's a disease that destroys motor neurons.

My advice remains to follow through the diagnostic process, which I do think will continue reassuring as to ALS.

 

[Mamabear1792]

I’m guessing the endoscopy test, was for the breathing, and tightness, and my diaphragm, issues plus I been having a lot of hard stools, and I here a lot of people with this disease have that, my current most bothering symptoms, is I’m having weakness in my tongue and like it feels numb, and it’s like that with my jaws and throat too, my face muscles feel very tight, I still have twitching in the tongue too, my tongue feels like it’s not moving the correct way, feels like I’m going start slurring but haven’t yet, could this be leading to bulbar onset, I know I had normal emg of my arm and leg muscles but they never did my tongue, diaphragm areas? I apologize for the not so good language. Thanks for your time.

 

[Bestfriends14]

You do NOT have ALS, any ALS symptoms, nor do you have clinical signs of this disease. "I hear a lot of people with this disease have hard stools." I'm confused as to where you heard this. Toileting issues do not indicate the onset of ALS, so I would let that one go.

Please, do yourself and the folks here a favour, and sign off this site. If you cannot calm your fears of having this disease, despite all the evidence pointing away from you having it, speak to a professional.

Good luck to you.

 

[affected]

The endoscopy is for the digestive system, not for ALS.
You are best now to stay off here and let your doctors follow a logical diagnostic path. ALS really isn't in the picture.
All the very best.

 

[Mamabear1792]

Right I understand , but guess I’m asking , because of the twitching in the tongue, with weakness and my tongue and the insides of my jaw are numb, and when I eat and drink, are talk my tongue seems like it doesn’t move right feels very weird, and very scary symptoms it all started with muscle weakness and twitching, then the diaphragm weakness and tightness hard to breathe, then moved up to the twitching and numbness and Weakness feeling in the tongue what really worries me about, ALS mostly bulbar onset ? I will also update you all on my test the endoscopy and I see neurologist again in January so if you all would keep this open till then? But would like to here what you think bout my worried symptoms that are getting worse?

 

[Bestfriends14]

Take these questions to a professional for help.

Take good care

 

[Clearwater AL]

Mamabear, you have posted 10 messages, you have been assured by extremely ALS knowledgeable
members you do not have ALS. Yes, anymore questions from here out need to be directed to professionals...
not here. There really nothing more anyone here can help you with. This is a ALS Forum.

At this point, for your own mental health, to continue here will accomplish nothing.

I hope doctors will find you the path to a healthy life..

 

[affected]

"Right I understand , but ... " Please do update us, but not until you have the new test results and have seen the neurologist as we can't do a single thing more until then.