Scared women

[Mzumbia]

Hi,

Sorry if my English is bad I move from Honduras 2 year ago to United States. I am scared I have als can you help me. What does breathing feel like when getting bulbar ALS? What body feel like? I am happy women and feel scared with symptoms.

 

[Atsugi]

What are your symptoms? Why do you think you have ALS? What does your doctor say?

 

[Mzumbia]

I have no doctor I can go see any time soon. I don't have a primary care doctor and need one for referral to neurologist. My primary doctor visit is in May. That is the closest they had. I have excessive saliva, breathing problems, twitching, can't sleep at night because the breathing.

How do other bulbar patients start with? Are twitching in mouth, saliva, and breathing the way it starts?

 

[Atsugi]

You didn't mention any slurring of speech. Look in the mirror and stick out your tongue. Can you move your tongue up, down, left and right?

The breathing is a problem, but it is not ALS.

The twitching is usually caused by nervousness or stress, but when you see your doctor, you can ask him to look at the twitches. There are different kinds, with different causes.

 

[Mzumbia]

Can breathing and twitching be first sign of bulbar? You know anyone who started like that? Then slurring swallowing or weakness? Is possible?

 

[Mzumbia]

Hello, can breathing and food stuck in throat with face and tongue twitches be bulbar? Breathing problems is all day and all night. Like a shreak breath every. 20-30 min. It even wake me up. I am very concerned.

 

[Atsugi]

This does not look like ALS.

Most people do not have a problem with breathing until much later.
People beginning problems with swallowing tell me they have the most difficulty with thin liquids, but food is OK.
Most people with Bulbar say the tongue doesn't move right.
Until your doctor visit, I don't think you should worry about ALS. ALS is rare.

 

[Mzumbia]

How long would person twitch for before major symptoms and weakness? Or loss of tongue movement and slurring.

 

[Atsugi]

Twitching can be anything. Many conditions twitch. Twitching does NOT mean ALS.
Most twitching is from stress, anxiety, nervousness.
Much twitching is from diet, vitamins.
ALS is very rare.
Bulbar ALS is extremely rare.
Below 35 years old--ALS is incredibly rare.

 

[AP1981]

I was diagnosed with bulbar als at 34.

It started with difficulty speaking. My speech was slower and slurred. I could not move my tongue everywhere in my mouth.

I also on occasion had trouble swallowing.

 

[Atsugi]

I was diagnosed with bulbar als at 34.

It started with difficulty speaking. My speech was slower and slurred. I could not move my tongue everywhere in my mouth.

I also on occasion had trouble swallowing.

Hi AP. Tell me, what was the first thing that caused problems swallowing. Was it solid foods or thin liquids?

 

[Mzumbia]

Hi AP. Did you have any other symptom than talking/speach? How long from first set of symptoms did you notice others? What other symptoms did you get after time?

 

[AP1981]

Hi AP. Tell me, what was the first thing that caused problems swallowing. Was it solid foods or thin liquids?

Thin liquids. And only when i was drinking too fast. Also a problem was dry crumbly toast. I think i was inhaling the tiny flakes.

 

[AP1981]

I am really reluctant to discuss as i feel it makes people look for trouble. Also i was pregnant which added other symptoms.

Very basically:
Oct 2014 - finding speech was slower and slurred. This got worse every month.
Nov 14 - pseudo bulbar symptoms like uncontrollable laughter began
Jan 15- trouble breathing. Note i was 8 months pregnant.
Feb - 15. Had caesarean section. Had trouble getting feet to walk properly after.
Mar 15 - could not run or hop.
Apr 15 - diagnosed with mnd bulbar onset.
June 15 - noticed twitching.

Progressive deterioration since

 

[Atsugi]

Sorry to read that, AP. I can't find words that fit what I feel. Just know my good thoughts are with you and your child.