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

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

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

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.

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.

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.

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