Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 09-01-2012, 02:54 AM #11
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Quote:
What has been implied in the past is that since I´m not outwardly showing any anxiety then the onset has to have something to do with unconscious underlying stress that I myself am not completely aware of.
I love that. I think it is so unfair that in my field of practice you can't use those explanations.

Let's say a patient comes with anemia, and all the routine tests are normal. I then have to start scratching my head and start doing much more elaborate testing until I find the cause. (or not...)

Wouldn't it be so much easier if I could say- I think it is unconscious underlying stress that you are not aware of, which is making your body make less red cells.

Or- I think you are really not putting enough efforts into making better red cells. I am sure you can do better.

I could even write a nice letter to the GP taking care of him suggesting emotional support and that everyone involved will be positive.


On a more serious note-

The proper respiratory tests that should be done, at the least, are:

routine spirometry (which measures the volumes your lungs can generate and may be completely normal).
MIP/MEP (which measure the force your respiratory muscles can generate against resistance)
MVV-which measures your respiratory muscle endurance. It is the volume you can create by breathing as hard and fast as you can for a minute.

A sleep study with measurement of oxygen and CO2 (this can detect subtle but significant abnormalities which will not be apparent during waking hours).

There are other more elaborate tests that can be done, if those tests are suggestive of a respiratory muscle problem, but do not give a definite answer.
But, those require special expertise and equipment, are not done routinely in most places in the world and their accuracy is not agreed upon. (as opposed to the SFEMG which we all know has a accuracy of 100%).
alice md is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (09-01-2012), southblues (09-01-2012), StephC (09-01-2012)

advertisement
Old 09-01-2012, 01:09 PM #12
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Quote:
Originally Posted by lawgirl View Post
I get everything you've described.

The worst bit for me is when I wake up from my sleep because I haven't breathed for a while, and I have to consciously myself breathe in and out when at times it's so hard to make my diaphragm move enough! Does anyone else get that?
Thanks Lawgirl for sharing

When I read your post I thought of 3 more things and wanted to edit them into my list, including breathing disruption similar to yours at night (but the edit time for the post has expired)

• Prolonged use of voice with volume gives stiffened lung sensation as if diaphragm has turned into 2 wooden planks!

• ´Stinging´ sensation just around the sternum

• Headaches from breathing disturbances upon waking

Anacrusis

Last edited by Anacrusis; 09-01-2012 at 01:36 PM.
Anacrusis is offline   Reply With QuoteReply With Quote
Old 09-01-2012, 01:25 PM #13
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Quote:
Originally Posted by alice md View Post
I love that. I think it is so unfair that in my field of practice you can't use those explanations.

Let's say a patient comes with anemia, and all the routine tests are normal. I then have to start scratching my head and start doing much more elaborate testing until I find the cause. (or not...)

Wouldn't it be so much easier if I could say- I think it is unconscious underlying stress that you are not aware of, which is making your body make less red cells.

Or- I think you are really not putting enough efforts into making better red cells. I am sure you can do better.

I could even write a nice letter to the GP taking care of him suggesting emotional support and that everyone involved will be positive.


On a more serious note-

The proper respiratory tests that should be done, at the least, are:

routine spirometry (which measures the volumes your lungs can generate and may be completely normal).
MIP/MEP (which measure the force your respiratory muscles can generate against resistance)
MVV-which measures your respiratory muscle endurance. It is the volume you can create by breathing as hard and fast as you can for a minute.

A sleep study with measurement of oxygen and CO2 (this can detect subtle but significant abnormalities which will not be apparent during waking hours).

There are other more elaborate tests that can be done, if those tests are suggestive of a respiratory muscle problem, but do not give a definite answer.
But, those require special expertise and equipment, are not done routinely in most places in the world and their accuracy is not agreed upon. (as opposed to the SFEMG which we all know has a accuracy of 100%).

Thank you Alice,

Your expressive post with equally expressive icons gave me the first smile of the day!

It is also extremely useful for anyone to have a list of breathing tests specific to MG along with them to a local hospital, at least from my experience it is quite likely that I am going to need that list once I get there.

Some years ago I ´lost´ out on being a proper mother for my son from the ages of 2-5 precisely because a doctor didn´t think to scratch his head! I might otherwise have been able to dress my child, play with and hold him more often.

In the end, it´s never really been doctor v. patient - they just haven´t known – I just haven´t known. (I also did not know what the concept of fatigable weakness was until the 3rd year of having it.) That said, I have learned more about people than I have about any disease in the doctor´s office.

That little SFEMG test that you speak about... (the one that can be anything from zero to a 100% accurate! ) is just around the corner. I have a lot at stake here, except for one small thing, my sanity!


Anacrusis
Anacrusis is offline   Reply With QuoteReply With Quote
Old 09-02-2012, 03:07 AM #14
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Quote:
Originally Posted by lawgirl View Post
and I have to consciously myself breathe in and out when at times it's so hard to make my diaphragm move enough! Does anyone else get that?

I was thinking some more last night about what is described about breathing consciously instead of automatically. That is a perfect description of how we end up having to accept what is less than normal. When you have muscle stiffness you go to a masseur. …..when you´ve pulled a muscle – you go to a physiotherapist - but when your breathing muscles are quitting on you you are just left to think about and work through the issue by yourself!!!!...Nice!!!

Anacrusis
Anacrusis is offline   Reply With QuoteReply With Quote
Old 09-02-2012, 09:31 AM #15
sunflower1116 sunflower1116 is offline
Junior Member
 
Join Date: May 2012
Posts: 19
10 yr Member
sunflower1116 sunflower1116 is offline
Junior Member
 
Join Date: May 2012
Posts: 19
10 yr Member
Default

I get all of the same symptoms, quite often also (I am on IVIG but am not responding to treatment). I always start my day like a "normal" person but then often by 10AM I am taking 3 small inhalations for every exhalation and I get terrible chest pain across the sternum and along the ribs. I lose my voice over the period of the day, and start to get excessive secretions in my throat because I can't swallow my saliva (I'm not on mestanon).

And yes, Lawgirl, I also wake up gasping for air and some nights have difficulty falling asleep because I can't get comfortable.

Also I notice that sometimes I am so tired I skip breathing and hold my breathe because consciously breathing is exhausting.


It makes me feel better to know that I am not the only one with breathing difficulties on here- sometimes it seems like most people just have issues with their limbs. It is extremely frustrating and scary that I can't breathe sometimes and I never know how to handle it because I have been hospitalized 12 times this year for being in crisis and the local ER never quite handles it well.
sunflower1116 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (09-04-2012)
Old 09-02-2012, 11:27 AM #16
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Quote:
It is extremely frustrating and scary that I can't breathe sometimes and I never know how to handle it because I have been hospitalized 12 times this year for being in crisis and the local ER never quite handles it well.
Do you have a pulmonologist? Why weren't you given a Biapap?
alice md is offline   Reply With QuoteReply With Quote
Old 09-02-2012, 12:34 PM #17
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

Alice, would you mind changing your specialty to MG and moving to Georgia?
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 09-02-2012, 12:48 PM #18
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
Default

alice md;

Can not find Biapap in Medical Dictionary. Can you show me where I can find it.

Thanks;

scrubbs
scrubbs is offline   Reply With QuoteReply With Quote
Old 09-02-2012, 01:41 PM #19
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

I think this site gives a nice explanation.

http://respiratorytherapycave.blogsp...-bipap_04.html
alice md is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (09-04-2012)
Old 09-02-2012, 05:16 PM #20
sunflower1116 sunflower1116 is offline
Junior Member
 
Join Date: May 2012
Posts: 19
10 yr Member
sunflower1116 sunflower1116 is offline
Junior Member
 
Join Date: May 2012
Posts: 19
10 yr Member
Default

Quote:
Originally Posted by alice md View Post
Do you have a pulmonologist? Why weren't you given a Biapap?

Alice my pulmonologist is a wonderful older doctor who doesn't believe that I have MG, but rather all this is "anxiety". He is the director of pulmonology at my local hospital and no other pulmonologist will see me because they won't "steal" a patient.

Although I love my neurologist, I can't stand her assistant- I can never get a phone call back even to make an appointment. I am completely frustrated and extremely angry as this has been going on for months.
sunflower1116 is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Breathing? southblues Myasthenia Gravis 5 07-24-2012 11:03 AM
My breathing -- HUH?? jana Myasthenia Gravis 34 01-23-2010 03:19 PM
still breathing prairiegirl Occipital Neuralgia and other Cranial Neuralgias 0 06-06-2009 08:27 AM
breathing Alan53 Myasthenia Gravis 8 12-28-2008 12:57 PM
Breathing stagger Peripheral Neuropathy 3 10-30-2006 12:18 AM


All times are GMT -5. The time now is 06:43 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.