als bulbar

[silenct]

guten Tag
My feelings for this forum who goes by the terrible experience of having als, my story began months ago with twitching throughout my body, but about 4 days to today, I'm having a feeling of something in my throat, I feel some difficulty in swallowing, I'm having to take deeper breaths a few times in the day, I tried this on google symptoms, was quoted that may be early bulbar als, this information made me really scared, should I worry about this information?
regards
Becker

 

[MaxEidswick]

grüß gott

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[dalvin]

Becker, your forum interest is misleading. It says you've already been diagnosed but your question indicates that you haven't. So which is it, if you haven't then it should say your interested in learning.
Twitches don't mean anything, everybody twitches whether they realize it or not.
Best thing you can do is see a doctor and quit googling everything. Dr. Google is a nut case

 

[Atsugi]

Becker, you should not worry. You don't have ALS. That's not the way it happens.

Dr Google is a terrible doctor.

 

[Zoogs]

Becker
I don't think you have ALS. I have bulbar als and it srarted with a slight lisp gradually getting worse. That was almost two years ago. I can still speak but very difficult to understand unless you are around me a lot. I also had bouts of severe yawning. Next was excessive salvia. I started having twitching in my legs about a month ago. I have a hard time swallowing some larger pills but can still eat mashed food. I have just been officially diagnosed the end of September so I am having a hard time at this point in accepting it. I just read that salvia occurs late in bulbar als but I have had it for over a year. Go to a neurologist. MD's haven't a clue as to what goes on in als. Have some tests and put your mind at rest.
Good Luck!

 

[silenct]

Breath

mit freundlichen Grüßen

Well I was in doubt if deveriar by these updates in my previous question
I decided to open this new question, these yesterday I realized that my breath this difficult, is having moments that have to pull the air insides of my lungs, I'm not having shortness of breath, but I am now forcing my strongest breath usual, I will schedule with neuro this week, someone could tell me if bulbar als start with difficult breathing?

regards
Becker

 

[affected]

no it doesn't

 

[silenct]

Grüße Freunde
will be my last question to you guys because imagine what it must be hard for some of you type it in the early bulbar als someone forum felt as if something in my throat that prevents food take its course walks, I'm having to do some strength swallowing, this would be a symptom of ALS bulbar?
regards
Becker

 

[affected]

No, it normally begins with swallowing liquids not food and is accompanied by slurring. We have done our best to answer you, adding more descriptions is not going to help really.

Please just go work with your doctor to sort your symptoms out, and I hope you find your answers there.

 

[ECpara]

Early bulbar onset starts in the tongue - speech begins to slur. Swallowing difficulties come later and not in the form of feeling like something is stuck in your throat. You just can't move food into the proper position because the tongue isn't moving properly. Breathing difficulties don't come until much much later - and again not in the form of needing to take deep breaths. On the contrary, breathing difficulties are because one with ALS can't take a deep breath. You don't have ALS. See your doctor for answers.

 

[Bliz]

The truth is:
-ALS can start with breathing difficulties, this is called the respiratory onset and it represents the rarest form of ALS. It manifests as dyspnoe.
-Swallowing problems unaccompanied with dysartria appear in only 13% of cases of bulbar onset patients. Dysatria is far more common at the onset. Inability to whistle is often the first sign of bulbar ALS affecting the oral stage of swallowing (lips+tongue coordination).

Get an evaluation from an experienced neurologist or neuromusclar specialist, not because of the problems (I believe they are psychosomatic as anxiety typically creates dyspnoe and swallowing discomfort) but for your own peace of mind.