Worried about onset breathing symptoms

Status
Not open for further replies.

Worried48

New member
Joined
Dec 9, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Panama
Hey everyone. I’m very concerned. I am 48 year old female ,I developed some shallow breathing with anxiety about month ago. Started getting worse over time. I then started getting jolted awake every night all night like with muscle cramps ,heart attack like symptoms, choking on air. I went to hospital got blood gas test came out with high oxygen low carbon dioxide . Now I wake up with hardly any oxygen lit feels like with severe shallow breathing . Drs just say it’s anxiety but I know it isn’t. This just started this month. And I feel like I’m getting worse every day. Breathing is so shallow and exhaling feels non existent. Heart rate is always high. I had ct scan and chest X-ray all fine. Ogygen meter reads normal. But my blood gases aren’t. I was fine before a month ago this all happened so fast. Can onset of respiratory symptoms start like this and progress like this ? I just got my primary to refer me to neurologist I went an emg test done. My lab work came out all fine. Thyroid is good. Platelets were little high though 437. I’ve never had shallow breathing like this before I can’t function or go anywhere it’s so bad. Exhaling is the most difficult. I feel like my breathing muscles are compromised I don’t know what it feels like but something isn’t right and I’m so afraid it’s ALS.
 

Clearwater AL

Very helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,264
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
Worried, you said...

"I just got my primary to refer me to neurologist I went an emg test done."

What was the "Summary/Conclusion" found at the bottom of the report?
That is far more important than blood work concerning ALS... which you
left out.

Above that...
" Drs just say it’s anxiety but I know it isn’t."

"Drs" apparently means more than one. But... you know better than highly
educated doctors and maybe one was a Neurologist?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,065
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Did you have pulmonary function tests? A sleep study? You can start by videoing your sleep.

If your heart rate is "always high," you might benefit from a beta blocker or calcium channel blocker, but I would eliminate lung problems and sleep apnea/other sleep disorders first.

The good news -- ALS isn't in this picture, presuming your EMG was normal.

Best,
Laurie
 

Worried48

New member
Joined
Dec 9, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Panama
I’ve not had an emg yet. Haven’t seen a neurologist yet. I’ve not had pulmonary tests yet either. I have a sleep study scheduled.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,156
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
OK, thanks for clarifying.
You are certainly jumping way, way ahead to the rarest onset of a rare terminal disease!
Come back and let us know the results once you have seen the neurologist and have EMG results.
Does not sound anything like ALS from your description so try to let the doctors do their job and work on eating well, getting good rest and basic exercise.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,624
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The problem with respiratory failure in ALS is inability to expel CO2. You stated your ABGs revealed a low CO2 where it would be high in ALS respiratory insufficiency. As suggested above let the doctors direct your care
 

Worried48

New member
Joined
Dec 9, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Panama
I read that hyperventilation and gas offset can be an initial symptom. I am much worse now. I am breathing through my throat muscles which I never knew you could without trying too intentionally. Left side of my throat is contracting when I swallow. Neck is tight and tense. I had sleep study and it came out fine. It doesn’t detect weak breathing muscles. It’s so weak and shallow still and always have too much air in but never enough to exhale. When I wake up in morning if I even get to sleep ,I have no oxygen to speak hardly. I don’t feel I’m being paranoid. I feel like I’m dying yet no one sees it. Because nothing shows on labwork,sleep study , ct scan of chest, X-ray , I can’t leave the house or go on walks. Breathing is just too weak feeling. I have pulmonary appt tomorrow finally , but dr won’t recommend neurologist till after pulmonary. Can all this happen in month and half time ,als symptoms like this ? I don’t typically have anxiety but the breathing and throat symptoms are giving me anxiety as secondary symptom. I appreciate any response .
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,473
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Please come back after you have met with the pulmonologist. You're asking folks here to try and diagnose you when you've not even gone through the correct channels to seek answers. Your symptoms are not indicative of respiratory onset, no matter how many ways you try to spin it. I'm sure what is going on is incredibly scary, however, jumping to thinking you have a very rare terminal illness is only going to fan the flames of fear.

Let us know how tomorrow goes.
 

Worried48

New member
Joined
Dec 9, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Panama
Yes. Ok. Thank you for your response. I appreciate it.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,156
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
You asked specifically can this all happen in one month and a half and be ALS. I'm adding to this, and not show anything clinically to any doctors?
Not a chance.
ALS breathing problems have nothing to do with oxygen I would also like to note. So whatever you are experiencing is something entirely different.
Please do let us know the results of pulmonologist tests etc, but you need to start working closely with doctors in person, not Dr google as it is not helping you at all.
I hope you get some answers soon, I can see this is very distressing.
 

Worried48

New member
Joined
Dec 9, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Panama
So my pulmonary function test came back normal. Although the dr must of got wind that I was concerned from the tech and told me I could be dying from ALS. He told me pulmonary test come out normal all the time with that. So he obviously likes to use scare tactics in his patients and it worked. I’m terrified now. Because the probably has not yet been figured out , I’m trying to get a referral for neurologist now. I don’t know if anyone knows how to read the test results but I’m going to try and attach. I couldn’t do the albuterol treatment as I have reactions to it.He said some numbers were off but he didn’t see anything concerning. My overall oxygen score was 81. That is low to me as the cutoff is 80. So I don’t know. He said was fine.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,816
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello- a note that the images were removed, as they contained personal information. Please make sure to block out any identifying information before reposting.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,473
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Your message is quite confusing. So, if I'm correct, the pulmonologist said that normal tests occur all the time with ALS (Wrong! Not if the diaphragm is affected), and that you could be dying of ALS? If I did understand this correctly, you're telling us that a well educated pulmonologist would subject himself to a lawsuit by messing with someone's mind like that?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,065
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'll reserve comment until you post the deidentified report, but I'd be interested to know if you addressed my earlier comments around tachycardia and sleep disorders. These possibilities are just part of the many possibilities that are thousands of times more likely than ALS.

A high red blood cell count can suggest sleep apnea. A high white blood cell count can suggest infection (which in turn can cause hyperventilation and other things you mentioned). So either way, presuming your PFTs didn't raise special concern for ALS, a good internist to sort this would be my next port of call.
 

Worried48

New member
Joined
Dec 9, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Panama
Yes. He was being sarcastic. Because He told me it seems I want to find something wrong with the test, I told him I just want to know if it shows muscle strength of the diaphragm and that I’d like to solve what is going on with me. He was in a huge hurry. Just kept telling me to go to a neurologist. And I had sleep apnea test came out normal. Tachycardia dr didn’t mention it at all just said I had it. It’s only been like this since this started almost 2 months ago. I attached my results and blocked out all personal info. So I hope it is enclosed in this. Thank you all for responding ,I’m so worried about all this. I appreciate you taking the time to respond.
 

Attachments

  • BD7EA62E-61E9-4BE3-8EA6-D7D11FD0C7D9.jpeg
    BD7EA62E-61E9-4BE3-8EA6-D7D11FD0C7D9.jpeg
    2 MB · Views: 53
  • 8F03A1DC-DA9C-4467-A7C7-B9574EF2BEBA.jpeg
    8F03A1DC-DA9C-4467-A7C7-B9574EF2BEBA.jpeg
    1 MB · Views: 54
  • 686ABF25-178F-4C52-816E-CDD182061371.jpeg
    686ABF25-178F-4C52-816E-CDD182061371.jpeg
    2.6 MB · Views: 52
Status
Not open for further replies.
Top