Shortness of breath!! Respiratory onset?

Status
Not open for further replies.

Orestis

New member
Forum Supporter
Joined
Apr 1, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Hi everyone,

Hope you all doing well and staying safe!

I am 33 years old male, living in London.

Over the last 2 months I developed constant shortness of breath.

I did 1 spirometry and 1 EMG that came back clean.

The neurologist ruled out ALS but I need a second opinion.

However, shortness of breath is constant and my fear of respiratory onset of ALS is growing!

I went to the ER last night with severe shortness of breath, ECG performed and was normal and oxygen levels were 98 so I was dismissed.

The shortness of breath is always getting worse during the night hours accompanied with burning chest pain.

I am afraid that my diaphragm muscles are getting weak.

Do you think this is possible respiratory ALS?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
People with respiratory involvement in ALS whether site of onset or not do not have normal spirometry results Continue to work with your doctors
 

Orestis

New member
Forum Supporter
Joined
Apr 1, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Thank you!

I will do another EMG next week with another neurologist to get second opinion.

Is there any test to check diaphragm's strength?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Spirometry/ pulmonary function tests
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,183
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Hi there,

If you had respiratory onset, and breathing was as bad as you say it is at night, you would definitely notice the effects during the day. There's a whole host of side effects that come when oxygen is truly bad in someone, namely CO2 buildup at night. That's great news that you O2 levels are normal. I'm not sure what's going on, but it doesn't present as respiratory ALS onset. Keep working with your docs.

Good luck to you and please stay safe.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,148
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Lots of other things can cause shortness of breath. GERD (acid reflux) does, especially at night. Anxiety does..

Be safe and keep working with your doctors.
 

Orestis

New member
Forum Supporter
Joined
Apr 1, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Hi everyone!
An update: Yesterday I did another pulmonary test.
This test included spirometry- diffusion capacity and measurement of respiratory muscles.

All tests came back normal!

when I left from his place - I felt well.No shortness of breath.

however,after 3hrs of sleeping I saw a dream about the spirometry and then I woke up gasping for air.

I checked my finger oxymeter and my oxygen level was good!

however, I couldn’t manage to go back to sleep as I was feeling chest pain/ and air hunger..

I will do another EMG next week- I have already one done a couple of days ago which came back normal.

1) based on your experience is this a respiratory Onset ?

2) have you come across anyone at the age of 33 or younger with respiratoty onset of ALS?

thank you in advance!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
1 no
2 no but more importantly no one with respiratory onset would have normal pfts no matter what their age.

continue to work with your doctors. You already had als ruled out by your neurologist. Don’t ask is this ALS ask your doctor s what is wrong
 

Orestis

New member
Forum Supporter
Joined
Apr 1, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Thank you so much!

Really appreciate your response!
 

Orestis

New member
Forum Supporter
Joined
Apr 1, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
An update:

the shortness of breath comes and goes which indicates that probably is psychological driven (OCD)

however, I feel weakness now in both my biceps and arms. Last week’s EMG test which tested both legs and arms came back clean.

I have an appointment with another neurologist tomorrow for another EMG just to get a second opinion.Will check both legs and arms, if that comes back clean as well then I will know for sure that I am a health anxiety case and I will seek appropriate treatment.
 

Orestis

New member
Forum Supporter
Joined
Apr 1, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
An update:

Another clean EMG today - 2 arms/ shoulders and 2 legs checked today.

I asked the neurologist to check throat / neck / tongue muscles but he refused saying that an EMG of both arms and legs is more then enough and I should stop thinking about ALS.

last question from my side:

1) Based on your experience could an arms / legs EMG miss bulbar/respiratory onset ?
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
2,042
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
No replies
No.

"Another clean EMG today - 2 arms/ shoulders and 2 legs checked today."

"I asked the neurologist to check throat / neck / tongue muscles but he refused
saying that an EMG of both arms and legs is more then enough and I should
stop thinking about ALS."

Go for a third... if that what it takes for you. But... there isn't any more help
or answers you'll find here.
 

Orestis

New member
Forum Supporter
Joined
Apr 1, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Thank you for your response!

It seems that I am typical case of health anxiety and I will seek for the appropriate treatment.

However, this experience gave me the chance to research a lot about ALS and I promised to myself that no matter what I will keep donating on a frequent basis for ALS research / cure.

Wish everyone to be safe and strong!
 
Status
Not open for further replies.
Top