Respiratory ALS?

Status
Not open for further replies.

Jb72796

Member
Joined
Mar 2, 2021
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NY
City
Brooklyn
Hello, I’ve had an EMG in February and it was only on my legs and arms. My question is, I have horrible breathing and back then the doctor said it’s not ALS but my breathing and ability to get a deep breath and cough is actually getting much worse and I’m currently in the hospital. Now all my other tests that would point to breathing difficulties are clean. Just had a doctor here tel me that ALS isn’t always picked up at every stage of the disease. I was not breathing good already when I had the EMG a few months ago. Would an EMG of just legs and arms find the issues that are in my ribs and diaphragm ? Or would I need to get an EMG specifically on that area? Thank you
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
2,098
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
Jb, from your past Thread indicated above from very ALS knowledgeable members.

“So we have two or three explanations for coughing issues that probably overlap. The good news -- ALS isn't one of them.”

“I provided you with several non-COVID thoughts. The choice is in no way between COVID and ALS. You don't have ALS.”

“Fantastic news about a clear EMG for ALS. Yay! You no longer need to be here and that is great thing. Lucky you.”

Then today…

“Or would I need to get an EMG specifically on that area?”

No. It's up to you to let this go.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,269
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm sorry that you're in the hospital. If breathing tests are not picking up a problem, it's hard to attribute any breathing problems to ALS. The damage that ALS does to the muscles that support breathing can clearly be seen on respiratory tests.
 
Last edited:

Jb72796

Member
Joined
Mar 2, 2021
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NY
City
Brooklyn
Specially a PFT?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,684
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston

Jb72796

Member
Joined
Mar 2, 2021
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NY
City
Brooklyn
I’m back here again because there are other ALS forums that say EMG can miss even respiratory onset ALS. There was several testimonies of people’s EMG’s and breathing tests being normal and eventually being diagnosed with ALS. They didn’t have many other symptoms. Is this truly accurate, if so, it is very much so a concern for me. I can’t get a deep breath EVER! I had a standing sniff test in January that showed a normally functioning diaphragm. I just don’t understand.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,221
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello- I've moved your post to your existing thread in order to keep things organized and in one place. You can keep posting here.

Also, for those wishing to comment and have all pertinent info, past thread here: Possible Respiratory onset ALS?
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,266
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Have you ever thought you may have something like asthma? Why in the world would you go straight to respiratory onset ALS, which is incredibly, incredibly rare and does not present in the way your symptoms are. Isn't that good news? Why would you not want to take this news and run with it?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,476
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry but I just don't know how we can do anything. Only your doctors examining you can answer. You just aren't meeting the criteria, not even a little bit, yet pushing for a terminal illness. We truly sympathise, but how can strangers on a text forum truly tell you different to your doctors? Please go back and push at your doctors for answers, only they can help you. I truly wish you the best.
 

Jb72796

Member
Joined
Mar 2, 2021
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NY
City
Brooklyn
Well, I’ve ruled out everything else and asthma meds don’t work. I have these ongoing breathing issues for 3 years and last year it got so much worse. I can no longer produce a strong cough, AT ALL! I had asthma as a child and know how that feels. Also have took every test known to man for breathing, autoimmune and all other conditions. The EMG I had in March didn’t reveal anything, but as I said before, those tests can look normal. It feels neuromuscular in nature. My intercostal muscles feel heavy and I’m only getting shallow breaths. What else should I check? I’m getting another spinal MRI because I may have craniocervical instability. Not sure what else is affecting my breathing and it’s declining . I also sleep with a BiPAP
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,221
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
You've posted in the past you have a few other health issues that can cause a variety of unusual symptoms. Ehler Danlos and relapsing polychondritis. I am assuming you are under the care of a specialist for these conditions also. What do they say about your breathing concerns?

Mostly, you are assuming you have ALS based on an incomplete understanding of how the disease works. You have a complicated health history and it is beyond the scope of this forum and abilities of the people here to help you. Our knowledge is ALS specific, and what you report does not fit into the experiences of the members here. We are not unsympathetic, but you are looking for something we are unable to provide you. Please understand this forum can not help you get a diagnosis of ALS- and it is clear you really do need to speak with someone with expertise in connective tissue disorders/autoimmune conditions.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,269
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
As a progressive connective tissue disorder, Ehlers-Danlos is certainly associated with respiratory impairment, as is polychondritis. If you are not seen at a medical genetics clinic with E-D expertise, that is the place to be. It is very likely that your BiPAP settings require adjustment, as they are not "set and forget." I see that the NYC affiliate of the E-D society is very active and offers a list of potential docs for you to consult, so that would be my next stop.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,476
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Truly, 3 years of symptoms and you say that you know the EMG can be clean. Sorry mate, please we sympathise, really we do. But you must understand that you are asking the terminally ill, many breathing through a machine and paralysed to forget all we know and agree with you. Please, work with your doctors, follow the great advice by Laurie on more doctors and let us know when you have a diagnosis. I am sorry if that sounds harsh, but that is over and out for us.
 
Status
Not open for further replies.
Top