respiratory and MG.
 

OK, after hearing a few "horror stories" such as recently by bluesky, and other MG patients, I have decided to try and do something.

but guess I was too naive about it.

wish you all the best,

alice

Recognition and management of respiratory problems in MG.
 

Not every respiratory symptom related to MG, curtails an emergency situation or is immediately life threatening. In fact, most of the times it is not. Yet, involvement of the respiratory muscles in this illness can have a significant impact on the quality of life, and significantly affect functional ability. Therefore it is important to recognize those symptoms as early as possible in order to institute proper support and possibly prevent life threatening complications.


What are the symptoms and signs that suggest respiratory muscle involvement in myasthenia?

Shortness of breath on physical exertion-eg-climbing steps, walking
Shortness of breath when talking.
Heavy breathing following a meal.
Chest pain or chest tightness..
Feeling dizzy after exertion
Feeling "tired"
Multiple awakening during the night, and non-refreshing sleep.
Waking up with a feeling of suffocation. Sometimes as if you have had a nightmare.
Morning headaches.
Unexplained fatigue.

Most of those symptoms are not specific, and may be unrelated to MG, but their occurrence or worsening; warrant a proper respiratory evaluation by a respiratory specialist with a good understanding of neuromuscular disease.

Some of the symptoms are easier to recognize as related to breathing problems, others are less obvious and are the result of CO2 retention. It is important to be aware of the fact that many of them may mimic depression or anxiety, and can be easily over looked and attributed to that.

A very easy test to perform on your own, if you experience any of those symptoms, or have concerns of respiratory muscle weakness, is to take a deep breath (as much as you possibly can) and then try counting, with taking in air again.

A normal and healthy person should be able to count to around 50, being unable to count more then 10 is usually an indication for respiratory support. Anything in between will suggest some degree of respiratory muscle weakness.

What can you do to feel better, until you have proper evaluation?

Rest as much as possible, and try to avoid significant physical or emotional exertion.
Stress can significantly increase the heart rate, and the oxygen demand and make things worse.

Find a sleeping position that is most comfortable and you don't experience as much shortness of breath. Sleeping in a semi-supine position may be helpful.

respiratory tests for MG patients.
 

All the tests should be done and interpreted properly by a respiratory specialist with experience and understanding of neuromuscular disorders.


A sleep lab, is a good starting point. Most neuromuscular disorders will have some manifestations during sleep, even before there is evidence for significant impairment during the waking hours. The reason for that is that during sleep there is always some degree of relaxation of the respiratory muscles, and gas exchange is less effective.

It is very important to assess both oxygen saturation and CO2 level,during the test, as there are patients with significant respiratory muscle weakness who do not have sleep apnea and manage to keep levels of O2 within the normal to low range, and do have significant CO2 retention.


All the respiratory tests are based on the inhalation and exhalation of air into a special device that measures the volume of air, the flow rate, and the pressures.

The basic spirometry tests measure the amount of air that can be inhaled and exhaled during a normal deep breath, without resistance.

It is important to know that as those volumes are not only dependent on the force of respiratory muscles but are affected by other factors, such as the resistance of the chest wall etc. they can be misleadingly normal, during one single respiratory effort, such as is done in those tests, even in the face of significant clinically important respiratory muscle weakness.

Therefore it is important to directly assess the respiratory muscle force. This is done by inhaling and exhaling against a fixed resistance.

The MIP –Maximal Inspiratory Pressure, gives a good idea of the general respiratory muscle strength.
The MEP-Maximal Expiratory Pressure, gives more indication as to the intercostal muscles.
Snif-is a better measurement of the diaphragmatic strength, and as it is the only test done by nose breathing it is more accurate then the others in patients with significant facial muscle weakenss.

As the hallmark of myasthenia is muscle fatigue and not muscle weakness, it is very important to assess the endurance as well. this is done by the MVV test, which checks the amount of air that can be breathed during repeat effort, as opposed to the single effort done in the standard spirometry tests.

The results of all those tests taken together should give a good general idea of the degree of respiratory muscle involvement (if any)

Oxygen saturation can be in the normal range or slightly lower, even in patients with significant respiratory muscle weakness, and is not a good parameter to follow alone in MG..

Patients with MG do not usually have a significant oxygenation problem, unless nearly paralyzed or have another respiratory complication, and most do not require supplemental oxygen.

In conclusion:

We suggest that every patient with generalized MG will have a full respiratory evaluation at least once.
In case that there is no significant respiratory muscle involvement it would give a good baseline for further follow up in case respiratory symptoms do occur at a later stage. This is important as the normal values of respiratory tests can differ among people, and therefore early recongnition of respiratory muscle involvement is only possible if the normal for that person is known, by showing a trend of worsening even if still within the low normal range.
If there is a significant involvement of the respiratory muscles this will allow proper assessment of its severity, and the need for respiratory support.

Patients that have symptoms suggestive of respiratory muscle weakness, should have a repeat evaluation if the first one is non-conclusive, as it may show a trend, and be more informative the second time.

Although all those tests are effort dependent, most patients can perform them very well, after given proper explanation . therefore abnormal results in a patient with respiratory symptoms should not be interpreted as lack of effort during the test, unless there is clear evidence that the patient is not able or is unwilling to co-operate.

Patients with depression, chronic fatigue etc. have normal or near normal respiratory tests, as it does not require significant motivation or effort.

Thanks, Alice. Yes, the task is daunting but the idea brilliant. And necessary. I have some things to add at this time.

MG Breathing "warning" Symptoms:

Sudden shortness of breath episodes
Chest wall muscles cramping or spasming
Generalized weakness that progresses to muscle cramps or spasms anywhere
Waking up choking


Breathing tests:

MIP and MEP: The highest number is always given, even when a series of four or more are done. That does not give a clear enough picture of what is going on with the patient. Numbers that trend downward are as important as a single absolute number. This is true of the other tests but none as important as MIP and MEP since MG is all about weakness that gets worse with repetitive activity. Duh.

Arterial Blood Gases:

Neurologists AND pulmonologists often do not understand the significance of this test (or non-significance too), particularly when it shows hyperventilation. And then there are the doctors who do it while someone is on oxygen, which skews the results.

Don't ever mock your patient and say they must be anxious because their ABG tests showed they were hyperventilating! ;)

Myasthenic Crisis:

DO NOT put an MG patient in a regular unit of a hospital. Due to the unpredictable nature of the illness and weakness while in an imminent or current myasthenic crisis, they need to be monitored in an ICU setting.

Standard treatment while in a crisis is not adhered to. Plasmapheresis is usually given though not always. Some patients can't have it but it should at the very least be the first "offer" of treatment. Treatment is a complicated issue since some people with MG do better with IVIG than plasma.


I'm sure I'll have more ideas, Alice. If you want this to "look pretty," I do have a Masters in design. When I used to work, I did a lot of marketing and design in the health care field. If you need my somewhat time and muscle restricted help, please let me know.

Please thank your colleagues for doing this.

Annie

Alice,

Very well written and you are correct when you say Pulmonologists don't understand MG or I should say, don't want to understand it. You wrote...

What are the symptoms and signs that suggest respiratory muscle involvement in myasthenia?

Shortness of breath on physical exertion-eg-climbing steps, walking
Shortness of breath when talking.
Heavy breathing following a meal.
Chest pain or chest tightness..
Feeling dizzy after exertion
Feeling "tired"
Multiple awakening during the night, and non-refreshing sleep.
Waking up with a feeling of suffocation. Sometimes as if you have had a nightmare.
Morning headaches.
Unexplained fatigue.

The above is my daily life..LOL Yet my pulmo pushed me off to my neuro and so on and so on so I just "live" with it. I have had a sleep study done and doesn't it figure that on that night, I slept well. It is so hard to tell what is MG and what may be something else {chest pain/heart} {dizzy/blood pressure} {suffocation/panic attack} <-- that is my personal favorite. LOL.

I can't hold my breath and count past 20, never mind inhaling again while counting, {I tried it} Keep up the good work Alice and I look forward to seeing how it goes for you. {I know I am working on speaking to EMS workers about MG}

Annie....

BRAVO on this one..

DO NOT put an MG patient in a regular unit of a hospital. Due to the unpredictable nature of the illness and weakness while in an imminent or current myasthenic crisis, they need to be monitored in an ICU setting.

I was in the hosp years ago and went into crisis and stumbled to the nurses station and passed out, later I learned they called a code blue on me. MG is very hard for Dr's and nurses to understand if they are not "involved" with the illness.

You and Alice are the best!

Great job!! It is wonderful that you are doing this!!
Kristy

One more thought, regarding funding of such an effort.

It may be possible for this to be funded by the MGFA. Or by some kind souls out there who want to make a difference.

I would also think that a CD or DVD of it may be more useful than a paper brochure type of delivery system. Perhaps a combo of the two.

Annie

Joanmarie, Everyone here is amazing AND has something to contribute, especially to this discussion! ;)

I'm writing this here as to not lengthen the thread. Xanadu, this was completely the idea of Alice. And I've only added a very small amount compared to what she has already done!!!

Alice, Annie - thankyou for this wonderful idea and work. Somehow we have to rewrite the training of Neurologists so that they can understand the pulmonary issues. I have just had an appt where despite me talking of worsening breathing issues, despite me having two Lung Function Tests 3 years apart showing the decline ....despite the Sleep Study showing neuro patterns of apnoea... despite all the facts of the decline in lung function...nothing was done to help. The paperwork was ignored. No CO2 tests have ever been done. I can only assume that breathing issues were considered to be imaginary despite the b& w results of three independent tests. An appt booked for 6 months when you are complaining of respiratory distress is not appropriate!

Somewhere , somehow we have to make the Neurologists and Pulmonary Drs aware of how MG works so that they can work together and help each other and help the patient.

Sorry
 

You posted and asked for input.

*please note that I am parsing paragraphs irregularly to facilitate ease of reading to those with visual issues*

First I am a healthcare professional. I can no longer practice my craft as the MG has left me with many and varied disabilities. But the knowledge remains. *edit*.
*edit*

*edit*

On to the actual content.
Any time you have an issue such as this, you should ALWAYS begin with your neurologist. He/she is the captain of the MG ship. He/she should be the one to forward you to a pulmonologist if necessary. *edit*

What is CO2 retention? Will the average person understand *edit* Will they understand that the poor quality of sleep and awaking with a headache are the symptoms that are related to CO2 retention? Will they understand that it is from the muscles tiring and failure to inhale deeply enough to blow of the CO2?
*edit* You are to inhale as deeply as possible then count while exhaling.

*edit*any respiratory distress should be evaluated immediately. *edit*MG patient can experience respiratory failure within minutes of presentation of first respiratory symptoms.

*edit*

*edit*

Monitoring of CO2 levels during a sleep study is not the standard of care either. It has to be ordered specifically and the indicators clearly delineated. There are several reasons for this, but the two main issues are invasive procedures on the patient when not necessary and insurance will not pay for this unless/until there are quantifying factors.

Again, point of standard of care--a respiratory therapist does not use one single effort when performing these tests. The standard of care is the average of a minimum of three efforts.

*edit* the most common of tests which is the PFT. That is the gold standard for initial encounter. Most literature is more compartmentalized. The patient needs to understand the tests As they are ordered not a laundry list of tests that may or may not be ordered.

I think you can see what I mean from the citations. *edit* I am sorry as I am certain you didn't post it to have it dissected, but you did ask and I answered.

*edit*
*edit*

Well guess that about covers it. You asked, I answered.

Oh, Deb, I thought THAT was you. MUST you pick battles EVERYWHERE you go??? This is such a lovely place -- such a nice group of people. We can all see that you are very, very smart -- can't you just leave it at that -- and NOT start throwing things around???

Alice, As I see it, just to clarify, you are posting to ask advice from a patient's perspective. You are not actually giving medical advice but gathering thoughts to help us and doctors. AND you are pulling together professionals like neurologists and pulmonologists to help, right? I can only imagine that you will have an "editor" as well.

Deb, I do appreciate the specific input you have pulled together. You used to be a nurse, right? So that input is useful.

I'm not any kind of medical professional, so all I can do is give my input from a patient's perspective. I think ALL perspectives and experiences are useful.

In debating any issue, you don't have to tear someone apart personally to tear apart their reasoning or to do a little editing. Or while giving a little input. That is my perspective as the daughter of an award-winning debate coach (and English teacher). I would hate to see this conversation become nasty. And, no, I'm not saying that was your intention, Deb. I'm simply stating my preference for how to discuss all this.

No one is perfect but the intent in this post is pretty darn close. Wanting to do something for MG patients, by anyone, is fantastic. I don't know the "forum rules" for doing this kind of thing but I would think it would be okay.

Doctors should be specific when it comes to this issue. Even then, there are personal preferences as to HOW each of us wants to "doctor." I know my pulmonologist and how she works and do not feel it's necessary to go to my neurologist first, nor does my neurologist feel it's necessary. They trust each other. And they keep each other in the loop, via me and faxing of notes/test results. That's my preference and it works for me. So even if Alice and her colleagues come up with a pamphlet on MG, it's up to each of us to take care of our own health.

I sure as hell would've liked it if the neurologists "caring" for me during my crisis had followed some kind of standard, like putting me in the ICU to be monitored, so I didn't have yet another medical experience where I felt traumatized. Standardized care works more often than not as long as it's sensible and the patient's health is of upmost concern.

And even after graduating from medical school and being residents, doctors are not Gods. They don't always know everything, especially not odd little diseases like MG. There are usually only a couple pages on it in medical books, even in neurology textbooks. So trying to "re-educate" doctors is a very good idea. It's better than doctors inadvertently killing us due to ignorance.

Annie

thanks everyone for your replies.

first, I have to give proper credit, to the captain of this ship, who has been working with me on this- a person by the name of Moshe Pick-who has dedicagted his life to help and improve MG patient care around the world.

second, I do not think any physician who gives general advice on the internet is liable for anything. there are many physicians that answer questions on the internet in their own field of practice, some much more inaccurate then what I have written here, and as there is always a dissclaimer saying that you should not do anything without consulting your doctor they are not considered liable.

I have said quite a few time, that it is irresponsible to give personal medical advice to people without taking a full history and doing a physical examination etc.

third, I will be glad if anyone wants to edit this, improve the grammer or what ever. my english may be less good then yours, and you are right physicians are not very good writers, and sometimes reading patient's charts and seeing the way we write, you would think that it was someone in kindergarten.

fourth, this is and was not intended at this moment to be a guide or advice to anyone, it was a draft based on information we collected from various sources. it was mostly meant to increase the awareness of patients and neurologists to the exsistence of respiratory problems in MG.

fifth, you may be right that it has to be re-written, so that there will be a seperate guide for patients, possibly written in a more lay person wording, and one for neurologists. it is definitely not meant for pulmonologists, and does not go into all the details of how the tests should be done. we assume that the patient will be reffered to a pulmonlogist who knows those things better then we do.

as to stressing the possible inaccuracy of those tests. this is the reality. there are some tests in medicine that have a very small error margin and others that have a larger one. that is why a non-experienced pulmonologist who does only part of those tests, does not repeat or follow up on them, can easily go wrong.

sixth, we deliberately did not use the word crisis and did not go into the managment of crisis. most neurologist use this word as a "magic" / mystical word. they all know that patients with MG can go into acute respiratory failure, and require intubation. most of them see it, as some unpredictable disaster that happens with no warning signs. but this is not the case. very rarely do patients go into crisis unexpectedly. most have respiratory symtpoms or various degrees prior to that. symtpoms that are atributed to anxiety, fatigue, depression etc.

we want to increase the awareness to such symptoms.

and as I have said this is just a draft, and we wanted to see if it worthwhile to continue with this initiative or should we just let things be as they are, where patients with significant respiratory symptoms are constantly "blown off" as having emotional problems etc.

and last but not least-as to malpractice suites- this in my oppinion is one of the saddest things that happened to modern medicine. it not only increased the economic burden significantly, it also led to the gradual loss of true partnership among physicians and patients. instead of seeing the person in need, the patient is seen as a potential rival in court. many needless tests are done in order to "cover your ***". quite a few physicians are ready to jeopardize their patient's well being and not do what they think is right, so that no one will blame them for not going by the book.

there are many studies that showed that patients are ready to forgive their physicians for even serious medical errors, as long as those are acknowledged and proper care is instituted to avoid further damage, but they are not ready to forgive disrespect, lack or care and indiference.

alice.

Alice,

I applaud your effort on this and wholeheartedly thank you for taking a point position to make a difference. But what I loved most was your last paragraph. How can we get back to reasonable, non-threatening, non-adversarial relationships? (she asked rhetorically). Seems there are pros and cons of our 'speciallized' medical care...I just wished we all remembered to people first and titles second.

Thanks again, Alice.

Sue

there are a few specific points that you mentioned that I thought were very important to clarify.

1. Monitoring of CO2 levels during a sleep study is not the standard of care either. It has to be ordered specifically and the indicators clearly delineated.

this is true, and that is why it was stressed, as a patient with a neuromuscular disorder and significant respriatory muscle weakness may appear to have a normal sleep study, if CO2 is not measured.
it is not an invasive test, as you can measure CO2 just like you can measure O2. the equipment for this is not standard and quite expensive, and therefore may not be available in every sleep lab. we wanted patients with MG who have the symptoms we mentioned to insist on having the proper tests, and not be ready to accept being told that their sleep study is normal, just because their O2 sats were OK.

2. After vaguely alluding to the urgency of this issue you proceed to tell the patient to lay down and relax.

one of the problems with the managment of respiratory problems in MG nowdays, is that it is seen as matter of extreme- either you are about to go into acute respiratory failure or you have "nothing" and all your symptoms are explained by "something else".

not every respiratory distress is an emergency that should be evaluated immediately. if a patient with a known neuromuscular disorder has some mild shortness of breath when walking, which resolves upon rest, or any or the other symtpoms we mentioned those are not an emergency. in fact most likely if such a patient will come to the ER, he/she will be told after a brief evaluation that it is due to "stress"., and no proper evaluation will be done to adress it further.

3. Again, point of standard of care--a respiratory therapist does not use one single effort when performing these tests. The standard of care is the average of a minimum of three efforts.

you are wrong, the standard of care if the best of three efforts, and most respiratory therapists will not take notice of the fact that with repeat efforts the numbers go down, and will take the first (best one) as the result.

4. PFT= pulmonary function tests, and it includes all the tests that are meant to assess pulmonary function. I assume that what you are referring to is standard spirometry/ flow volume loop, and this is mentioned, but possibly not clearly enough.


last but not least.

I do appreciate the effort you put into this. and as my english was learned as a physician, it may be a bit akward, and I will be glad if you can translate it to more "true english" that can be better understood by everyone.

I will be very glad if you will be ready to help in this initiative, as possibly together we can do something so that there will be less patients that have to experience those traumatic encounters, like bluesky, and others I have met in real life and cyberspace.

alice

great idea. you are probably right that a CD or DVD may be better then written material.

I know that there is still a lot of work to be done on this. as I said this is just a draft, and sort of throwing it to see what you think about it.

I think that the more patients and neuros that we can get involved and interested in this, the better.

thanks,

alice

I have been thinking it over.

I am a highly respected physician. despite significant dissabilities, I continue to have the full respect of my patients and co-workers.

I do not know how true what you are saying is, but I definitely am not interested in anyone sueing me just because I tried to help other patients, not to go through what I have been through.

and therefore I have deleted this post and will no longer post on this forum.

all the best,

alice.

Alice
 

Its a sad day when someone who has given so much to a forum is hounded out by someone negative towards ideas to improve patient care.

Your idea Alice to help other MG patients was a courageous one and you being a dr with MG were in the best place to be able to help others.

Advice is what this forum is about, a lot of advice that is given here is by lay people who use their experience to help others. Your advice came from a medical background and you could explain procedures and processes that some of us just didn't get.

Its a sad day when such a courageous effort is written off like that.

I would like to intervene here to comment that this is first and foremost a self help support community

Alice, please do not let yourself be intimidated here. You are a valued member and you have not violated any of our guidelines.

However, the other poster has and so has been edited. We do not allow threats and flame posting here. Period!

We have a disclaimer here on all of Neurotalk pages
in that light, no posting here is considered "medical advice" nomatter the qualifications of the poster.

Alice, I do hope you will reconsider your decision and will stay on. You are a welcome member of this community

ps here are our guidelines for anyone who needs to read them
http://neurotalk.psychcentral.com/showthread.php?t=1293

as well as our Terms of Use
http://psychcentral.com/about/terms.htm

I missed the original suggestion by Alice. Funding for innovative projects can be found. Please point me to the idea.

Thanks

Bill
:confused:

thanks for your clarrification.

I do not have a problem with someone correcting my grammer or explaining something in a better way, I was just truly concerned that some one may see what I write as "medical advice".

obviously my malpractice insurance is not going to cover something I wrote on the internet, and not in my field of expertise.

I have been trying over the last year to understand why excellent physicians have made serious managment errors in my case, time and again. and why similar errors are done in the management of other patients as well.

I have done this by discussing it with patients (in real life and in cyberspace) and also with various neurologists, including some who were involvled in my care and were ready to have those discussions with me, once they realized that I am truly trying to understand and learn, and not fiind reasons to sue them or destroy their reputation.

one of them who sent me home in a near crisis state, telling everyone involved that I was just "anxious" sort of apologized for not knowing about various respiratory tests. talking with other neurologists, I realized that most of them don't have much knowledge in this respect and yet, are those that make the decission if the patient has MG related respiratory problems or not.

I also realized (from talking to neurologist and patients) that more times then not symptoms of respiratory muscle involvement are atributed to emotional problems. I can only speculate as to the reasons for that. but, what ever they are, I think that this has to change. I think that neurologists just don't have the right tools and are very frustrated when faced with symptoms that they don't know what to do with. and without proper tools it is very hard to evaluate respiratory muscle involvement in neuromuscular diseases.

although, I have been "working" on this for quite a while, with a great person who has dedicated his life to help MG patients, the ordeal of one of the members on this site. a very courageous woman, who has been struggling to recieve proper managment for her illness with no avail, made me want to do something now.

and I just wanted to know if this is the right way to go, and if people have any better ideas or suggestions of how to make this info. more accurate, easy to understand and available to those that need it- patients and their neurologists.

as a patient I would have loved to have something like that, a few years ago, when I really knew very little, and trusted my neuro, when he told me that there is no way that the gradually worsening respiratory symtpoms I was experiencing could be due to MG.

as a physician, I am always glad to have better tools that will enable me to better manage my patient's illness. and I believe that neurologists facing MG patients would be glad to have better ways to understand their illness as well.

thanks,

alice

Please Alice...
 

Alice,

Please do not leave this forum, 99% of us here respect you and what you have to say. First and foremost YOU are an MG patient, seems someone here has forgotten that. Petty jealousy from one does NOT reflect what the rest of us feel.

Please stay and continue to look to us for support and input.

Alice, Both patients and doctors need as much information as they can. Medical school is great but, as I'm sure you know, you can't possibly learn everything you can to help patients. That's why there are specialists. But, even then, there are neurologists and pulmonologists who don't know enough about MG. Because of that, patients who are suspected of MG often go from doctor to doctor to get help and it can take a LONG TIME to get diagnosed. And some areas of the country do not have MG specialists.

I fully support you in this effort, as I have already said. Keep fighting the good fight.

Annie

Alice,

You are a valued member of this community. It isn't just the knowledge you have shared or your inteligence that we have admired. It is that you are a caring person. I - like others - do hope that you will reconsider. It would be a loss to all of us if you were to leave the forum. But whatever you decide, I wish you the very best in all of your endeavors.

Sue

Alice, PLEASE DO NOT LEAVE!!

A journal article that might be helpful -- I have a copy in my purse -- along with all of my other info and literature -- in case I need to "teach" any docs (LOL).

http://www.rcjournal.com/contents/09.06/09.06.1016.pdf

Please stay Alice !! You have helped us so much and your knowledge of the MG and respiratory markers is invaluable. I know from my personal experience that most Neurologists have no idea of pulmonary tests and how to interpret the results. I have had the results you talk of - and 3 Neuros , 2 Endos and a Pulmonary have all missed the significence of what it all means. If there was a DVD or published paper that made this all clear - the quality of life for the MG patient ( whether dx or not yet dx ) would be vastly improved.

Please stay !! :hug:

Alice,

Please don't let ONE member be the cause of you leaving. You are so caring and helpful to us all. Please stay!;)

Hugs,
Pat

Why does abg's in a myasthenic show hyperventilation first?

iwasanurse,

It doesn't always happen like that! Body chemistry is complex to say the least. You don't have to have a degree in pulmonology to know when you can't breathe well! So leave all the complicated stuff up to the doctors.

Sometimes the arterial blood gas will have certain readings that show someone's body is hyperventilating. Doctors can often attribute that to anxiety, which is most often not true. Then they can miss the fact that someone with MG is getting worse.

If you do want to read up on all this . . .

http://www.ivprehospital.com/bloodgases.cfm

http://www.madsci.com/manu/gas_acid.htm

There are a lot of articles/books on this stuff. The most basic one I've found is Mosby's "Fluid, Electrolyte and Acid-Base Balance."

Hope that helps.

Annie

hyperventilation
 

let me try and explain it.

breathing is one of the most important functions of living organisms. therefore we have a very effective "alarm sytem" letting us know that there is some problem with it, long before it becomes a true threat to our life.

when ever we have difficulty breathing, we feel scared (and trust me I have seen amazing machos, they are just as scared, because it is almost an insticnt), and this is the way nature protects us from anything that can jeopardize our breathing.

also this feeling of fear, makes our heart rate go faster, our breathing rate go faster etc.

another word for breathing fast is hyperventilation, and fear from any cause (including anxiety) will cause us to breath faster. so when we have weakness of the respiratory muscles that leads to fear, the first thing we do is breath faster. many times this can lead to an "overshoot", and the CO2 levels will go down just as if we were hyperventilating due to anxiety.

but, as you breath faster (and your CO2 initially goes down), you also make your respiratory muscles weaker (as exertion always worsens MG weakness), and then you can no longer breath faster, so you go from having shallow and fast breathing to shallow and slow breathing, and then your CO2 levels start to rise, as you can no longer move enough air to get rid of it.

this can be a very rapid down hill course, and one way to stop it, is by learning to actively avoid this rapid breathing phase. this is not always possible, because as I said it is an instict, and the worse the weakness of the respiratory muscles is the more you feel this suffocation and the need to breath faster, and then the faster you go down hill.

another, and in my oppinion much better way to stop this, is by providing non-invasive respiratory support as soon as there are early signs of respiratory muscle weakness. and there are studies that show that this can many times lead to the avoidance of the need for intubation.

this is also why I don't like using the word "crisis" as when does the crisis start? when someone is having early respiratory signs, or only when he/she is on the verge of intubation, and why wait for that to happen, if you can recognize it much earlier in a large percent of the patients?

it is also a frightening word that gives you the feeling of some disaster that can happen without any warning signs, and can't be predicted or avoided, and then you may find yourself in the ICU with an endotracheal tube for a very long times, when this is most likely not the case.

MG is a disease of fatiguability of the muscles, and there is no reason why the respiratory muslces should be different in that sense. over exert them, without giving them proper rest on time, can lead to severe and extreme weakness. recognize early signs and rest on time, and more times then not they will gradually recover, just like the muscles of your eyes, arms, legs etc.

at least this is the way I see it. and this has been my own experience, although I do have a fairly unusual form of this illness, so it may be true only for me.

alice

I cannot but believe that this thought of Alice's may be a discovery in the way MG works...and that it may provide clues at the diagnostic stage.

I have had an almost miraculous improvement to an inhalor that in theory should not be necessary for me.

Even my 30 year old headache is starting to disappear. I now wonder if many of my headaches and symptoms of fatigue were CO2 retention. Such a simple test when sleep apnoea studies are done but in my case - as the Dr did not order this test - I was refused the one machine on the ward that could test both O2 and CO2.

This could be such an important stage of the diagnosis ... I cannot believe we are the only two to have noticed this. And how important breathing can be.

I'm glad I'm not the only one that thinks breathing is important;):D:D:D

I once told my neuro nurse, who was amazingly wonderful, within the first 5 minutes of seeing me she could pick up whether I was having a good or bad day. I was trying to explain about my breathing, and the best way I could was that "sometimes its easier not to breath" that is, there seems to be so much effort in trying to breath in and out, that not doing so that is less tiring. Its just a shame that I need to do this, cos its using up valuable energy:D
Kate

Alice,

I read this thread when you first posted and I was so very touched that you would go to this effort to help me and others with respiratory problems. I think I had a real smile on my face for the first time in weeks. I felt like someone was really listening and understanding what I was going through. I want to thank you from the bottom of my heart.

I was away from the site for a few days because I was so sick and weak, but you can imagine my horror when I came back and discovered what had happened with this thread. First of all, let me say how terrible I felt that you had been put through this and had felt threatened. I came on the scene too late to read, unedited, the post with the destructive (as opposed to constructive) criticism so I missed the exact words but I'll tell you that reading it and everyone's reaction made me feel like I'd been punched in the stomach. There is so little help for those of us suffering without treatment or understanding, that to have someone reach out feels so miraculous and kind. I completely understand if you ultimately decide to stop posting, and I would never want you to put yourself in harms way. I do want to tell you that your postings and your presence are priceless, a true gift.

Sometimes I get scared posting too. I don't want to be sued by a medical provider or become known as a troublesome patient in the mg/neurological community.

I do want to say that your original point was a very, very good one: respiratory symptoms are overlooked in mg patients and the tests and symptoms are not well known. I think that was your point, or maybe it's just mine. :) I think it would be wonderful if you could produce this as a pamphlet, or a cd. I haven't had any luck explaining this to the neurologists I've seen and to be honest, I've never had any luck "educating" a neurologist. I won't even try anymore. Which is why I think it would be so good to have this information provided from the top down - I think the mg foundation is a great idea. At any rate probably by md's to md's somehow.

Alice writes: one of the problems with the managment of respiratory problems in MG nowdays, is that it is seen as matter of extreme- either you are about to go into acute respiratory failure or you have "nothing" and all your symptoms are explained by "something else".

Alice, this exactly describes my issues. The assumption is that this is a black and white situation: either I'm in crisis or the breathing difficulties I have are not due to mg. My thoughts are that if mg causes muscle weakness and the weakness is affecting my lungs than I'm having difficulty breathing because of mg. In my case I have not yet had to be intubated but the breathing problems have caused me to be almost completely debilitated. I have spent, for instance, the last two days attached to my bipap ventilator. I can not get up and walk about if I'm having a bad day. I have chronic, non-crisis but debilitating breathing problems.

Do I have an unusual variant of mg or are these problems overlooked? This is what I wonder: I have tested positive twice for antibodies at the mayo lab where if the blood sample comes back positive then they send it through another test to rule out false negatives. So I'm going to assume that I definitely have antibodies. Then in that case does it make sense to say that I don't have mg because my symptoms flare and remit (as told by a regional neurologist who was under the incorrect impression that mg symptoms are stable and therefore assured me she had never seen a diagnosed mg patient whose symptoms are not stable) or that I do have mg but all of my symptoms (the worst being breathing difficulties and facial weakness) are not attributable to mg because they are not typically the most prominent?. Isn't that a self-fullfilling prophecy? Backwards logic? If a disease is caused by an antibody which causes muscular weakness then how can you then say that despite the antibodies the symptoms aren't caused by the disease because of a human created list of acceptable or typical symptoms? Wouldn't that create a sort of self fullfilling prophecy because, yup, sure enough the people who are given the diagnosis and treated for symptoms exactly match the description? In a similar vein, I believe that pain and fatigue have been left off of the official list until recently although some patients have long complained of these. I think there needs to be an appreciation for the variance of symptoms as presented by mg patients.

Joanmarie63 wrote:

Shortness of breath on physical exertion-eg-climbing steps, walking
Shortness of breath when talking.
Heavy breathing following a meal.
Chest pain or chest tightness..
Feeling dizzy after exertion
Feeling "tired"
Multiple awakening during the night, and non-refreshing sleep.
Waking up with a feeling of suffocation. Sometimes as if you have had a nightmare.
Morning headaches.
Unexplained fatigue.

The above is my daily life..LOL Yet my pulmo pushed me off to my neuro and so on and so on so I just "live" with it. I have had a sleep study done and doesn't it figure that on that night, I slept well. It is so hard to tell what is MG and what may be something else {chest pain/heart} {dizzy/blood pressure} {suffocation/panic attack} <-- that is my personal favorite. LOL.

Yes, that is my daily life too!! And I also have been told that I have anxiety - many, many times. Just recently I was sitting in the doctor's office with a hr of 134, the result of having had to walk across the parking lot 20 minutes earlier. As I was sitting there calmly explaining why this was not a symptom of an anxiety attack the nurse was insisting that I had anxiety problems. I must have been the most calm person ever to have a panic attack. :D

I'd like to throw out two more symptoms for consideration:
- difficulty breathing when lying down
- difficulty breathing when bending over.

I've have these problems to the point where I can't ever lie down without the bipap now, but I've suffered from both of these problems for years. I found a reference to these in the following book: You, Me, and Myasthenia Gravis by Deborah Cavel-Greant, pg 14. It was so nice to see my symptoms written down in black and white! :)

Xanadu wrote:
I cannot but believe that this thought of Alice's may be a discovery in the way MG works...and that it may provide clues at the diagnostic stage.

I have had an almost miraculous improvement to an inhalor that in theory should not be necessary for me.

Me too, me too!!! Although my sleep study was *horrible* (not breathing for up to 45 seconds at a time, oxysats in the 60s), the use of bipap during the day is absolutely necessary to me, but I had to figure that out for myself. And yes, absolutely yes, I think Alice is on to something. It has to be a piece of the diagnostic puzzle.

Redtail wrote:


I'm glad I'm not the only one that thinks breathing is important

I once told my neuro nurse, who was amazingly wonderful, within the first 5 minutes of seeing me she could pick up whether I was having a good or bad day. I was trying to explain about my breathing, and the best way I could was that "sometimes its easier not to breath" that is, there seems to be so much effort in trying to breath in and out, that not doing so that is less tiring. Its just a shame that I need to do this, cos its using up valuable energy
Kate


Yes, I experience this exactly. I can especially relate to it being easier to not breathe. You said that so well! Sometimes I actually do stop breathing on purpose, but sometimes my brain decides on its own and I just kind of realize that I've stopped breathing. Sometimes I'm still breathing but it's so tiring, so hard.


I really hope that we have not lost the momentum on Alice's idea. Alice, please, please don't give this up. You are so brave and caring to do this. Getting this information published and out there could have an impact on thousands of lives. There are so many of us out here waiting for a little bit of help and your work and your ideas mean so much. Even the idea that someone is trying to help is so encouraging. Please don't give up!!!!!!!

Ally

Alice, I recently ,while following up on a benign thyroid cyst, I had chest xray come back abnormal. The immunologist was so concerned, she called me shortly after 7 am to tell me that they saw "something" on both left and right side and scheduled a CT right away. It was decided that the left side was scarring from perhaps a past infection and the right side was "probably" just scarring from a lumpectomy I had a year ago. Im concerned because Ive always had difficulty breathing and Im wondering if it could be Interstitial Lung Disease. Am I over thinking it?

if you are concerned it is a good enough reason to consult a pulmonologist.

they can do respiratory tests that will show what kind of respiratory problem you have.

a good pulmonologist can differentiate between interstitial lung disease, respiratory muscle weakness, and other possible causes of breathing difficulties.

alice.

i am reading this thread at 1:16am
 

in the morning as I had to come downstairs so as not to wake everyone else with my coughing and wheezing.
I have just completed four courses of antibiotics but symtoms persist.
As I said in an ealier post elsewhere I am finding I am coughing after drinking or eating even small amounts and sometimes when i lie down.
I have agreed with family doctor to reduce my weight to 160 currently 200lbs but was 230 in october.
Most of it is around my belly and seems to be a lot of water retention as morning to night weight difference can be as much as four pounds.
He has agreed to monitor my blood pressure.
This was while I was on the last 5mg og pred and my blood presssure was 140/80 however now that i have stopped pred for over a week blood pressure is 118/78.
:grouphug:

Thanks Alice...im having my abnormal chest xray results and ct scan results sent to neuro since I see him on 29 th......then maybe he will send me to pulmonologist