Your thoughts please

[Roxxy]

I feel horrible for posting here and I hope to god I don't belong here, but I've been dealing with some troubling symptoms that I found out could possibly be als. Before I get further in I have been evaluated by a neuromuscular specialist for my symptoms which are shortness of breath climbing stairs or doing anything very strenuous and now it's gotten to the point where is at rest also but not to bad. I also have these "spells" as I call them where my breathing gets really bad it feels like I can't feel myself breathing, my throats feels like it closes up, my ribs feels so tight, and my nose feels like it's clogged.

I also deal with twitching all over, but here lately mostly in my ribs and I'm constantly yawning all day like a mad man ad I am constantly sighing and taking deep breaths. The neuromuscular doctor is puzzled by the breathing issues, but my pulmonolgist performed a breathing test a few weeks ago that showed weakness. He seemed quite puzzled by this and told me to go back to neuromuscular doctor who also is puzzled. I had a clean emg last year when the twitching started, but I wasn't having the profound breathing issues then either. My hands are starting to cramp up a lot when doing certain tasks. The neuro is doing another emg in 4 weeks and I'm very concerned at this point. Any one had any similar stories of how they presented?

 

[Roxxy]

Also I get full fairly quickly when eating small amounts, which my stomach doctor told could be gastroparesis which he's testing me for tomorrow. Does that happen in als?

 

[affected]

I can see that your neuromuscular specialist is puzzled as these are not presenting symptoms of ALS.

If you are seeing specialists, let them do the work - don't start this kind of researching and add a heap of things on top to make you over-anxious. If you are scared, ask your doctor to talk about it with you.

All the best.

 

[Roxxy]

Can't als affect breathing first? I forgot to add that I get this rubbery weak feeling when chewing in my jaws and also the same feeling in my tongue when moving food around.

 

[Roxxy]

A real good example when I perform oral sex on my spouse my tongue and muscle under chin gets really weak and tired that's the best way to describe it sorry of it's to vulgar.

 

[affected]

There is a post at the top of this forum section titled READ BEFORE POSTING.

Please read it and you will see that you just won't feel all this stuff. All the best.

 

[Roxxy]

I read the sticky but I'm confused I've read people here complaining of fatigue and weak tongue but why isn't it in the sticky neither is people that start out with breathing.

 

[affected]

If you compare the sticky to what people say here then you will always get confused unless you take the sticky as our official position.

You don't feel weak, you are weak. You feel normal. My husband would look at his hands in total surprise as they would simply drop something, be unable to grip something or whatever as they felt totally normal.

Respiratory onset is the most rare of all ALS which is incredibly rare. If your neuromuscular specialist and pulmonologist cannot see the cause, then ALS is unlikely and I would be asking them what should be pursuing.

I hope that helps.

 

[Roxxy]

Yea that does help a bit thank you, but is it not considered weakness when for example performing oral and it just stops working and I have to wait for it to recover. Also the MIP and MEP I had done showed weakness mostly on the MEP that's real clinical weakness no? From what I've gathered there is very few things that cause that. Thank you again for your responses affected.

 

[GregK]

You do realize that this is visible to the entire Internet, yes?

 

[affected]

with ALS things don't recover.

fatigue recovers, clinical weakness does not.

you need to discuss MIPs and MEPs results with the doctor who has examined you and has the actual test reports.

I am sure you knew that we couldn't give much more than this as strangers on the internet compared to doctors who are working with you.

Please let us know once they have figured it out.

 

[Roxxy]

No I don't expect a diagnosis or anything I came here to see if anyone had any similar experiences and it turned out to be als. Isn't that what this board is for?

 

[affected]

Yep that's what this forum section is for, and I think we've about covered it for you.

ALS doesn't start the way you are describing, so I'm really happy for you that you can be reassured by this. All the best.

 

[Roxxy]

You say it doesn't start this wayi don't think this would be considered onset I've been having the breathing issues for around a year and a half they have just progressed fairly quickly.

 

[Roxxy]

It's also worth noting I've had cardiac and lung issues ruled out.