I've been pondering -- and trying to make sense of this. CANNOT -- my brain is either TOO small -- I'm in a really THICK fog -- my MG is really WEIRD -- or as we say in the South, something "ain't gee-hawing".

"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." (From Alice and Moshe)

I've done this test a LOT of times recently -- and the most I've gotten up to is ELEVEN!! But. I feel fine -- I'm not even IN an exacerbation right now (well, I may be coming OUT of a "mild" exacerbation from a cold I caught in December). But, I went to Wal-mart yesterday and walked around (holding on to a cart) for a couple of hours.

I've also checked my respiratory rate a lot -- it is about 7 or 8 breaths per minute.

I took my shirt off and looked in the mirror to see HOW I breathed -- my shoulder blades seem to come UP and I get a hole under my adam's apple when I inhale --my stomach doesn't seem to move much.

I can ONLY take ONE deep breath for a doctor to listen to my lungs -- TWO deep breaths and I am ready to PASS OUT.

I can ONLY take ONE deep breath for a mammogram -- TWO or MORE..........

Don't even ask me to RUN..........but, I can walk at a "somewhat" regular pace (when I am NOT in exacerbation). I have to build up to walk distances, but that seems "normal" and reasonable.

My neuro (MG specialist) sent me to a Pulmo (very familiar with MG) after my first appointment. So, I've had the tests -- and everything has been documented.

So, my question is -- WHY have I not been in CRISIS? I seem to be on the verge of respiratory failure -- even my family thinks so -- I am NEVER left alone.

DON'T get me wrong, I am NOT complaining -- I have it GOOD!! I love my life. I am able to do so many things that I enjoy -- and I have so much peace about my situation. But, if I UNDERSTOOD this -- maybe, it would HELP somebody ELSE -- maybe some of YOU.

Jana,

I think I get what you are saying. My breathing is bad also but I am "fine" at the same time. I just don't understand the whole breathing thing with MG and well, like you I am at peace with where I am.

I just don't bother with the Dr.s anymore because not to long ago I had such trouble breathing my husband called 911 and they had the nerve to say it was a panic attack....LOL

So I just go to my normal 3 month check-ups and continue to live life at "my" pace, even if it does take me an hour to get through the food store even when buying just a few items

Joanmarie, I was beginning to get a little paranoid -- YIKES!! I saw ALL of these views of my thread -- and no one saying anything -- was afraid I had said something "offensive". Would NEVER want to do that -- would NEVER want to hurt feelings or make anyone uncomfortable -- so THANK YOU so much for responding!!!!!

I'm so sorry that they are calling your breathing "panic attacks". NOT taking you seriously can ONLY make things worse. I'm glad you have a hubby who takes good care of you!!

Actually, I don't think that my breathing is "bad" -- I think it is FINE. That is what IS really strange. Unless I am called upon to do something out of the ordinary (granted I AM on disability), I don't have any problems.

Like you, I do live life at "my" pace -- and am very grateful to be able to do that. At times, I am still able to go at "normal" speed -- I guess because I "used" to operate at WARP speed (LOL) prior to MG.

Perhaps it would help ME if our members would take the tests and post THEIR results in this thread.

How HIGH are YOU able to count after taking a deep breath? (see post #1)

How many breaths do you take per minute?

I did your test, no problems counting, but I only have ocular MG.
I had the respiratory techs in my room every 4-6 hours waking me up to do breathing strength tests this week.

Thanks, Allen -- I'm so glad you aren't having breathing difficulties. But, didn't you say that you have fatigue issues -- are you SURE that you "only" have ocular -- not generalized?

I count 5 breaths per minute at resting.

I did the breathing thing twice because I was unsure about the instrucions.

1-I took a deep breath, let it out, then breathed in for about 55 seconds and then I was unable to breath more in.

2-I tood a deep breath, then continued to breath in as much as I could and I could only breath in more for 15 seconds.

In both of these cases I could have held my breath longer, but no more air would go in.


After doing this test twice, now my breathing is about 15 breaths per minute.

Did I do it right?

Im not sure of anything at this point, its been around one year.
when I tell my neuro of some muscle weakness, he doesnt say much, its possible he says, when Iimention my muscles in my arms burn sometimes when I dont do much, just lift them alot, he says maybe, so I dont think about it.
My days have become shorter and shorter for my working or hobby working, but Im not sure if its old age, weight related, stress related, or because my eyes have gotten so bad I just cant deal with it all and shut down, I really dont know anything. I do know its 2:40, Ive been watching football all last night, and since 1 today, and dont feel a need for a piece of mestinon.
And to me, that is very good.

Here are my numbers....

9 inhales per minutes at rest

Taking deep breath and holding it as long as possible (no air in or out) - 42 seconds.

Taking deep breath and then trying to pull in more air -- about 10 seconds (pulled in some air and couldn't hold it or control the exhale! No idea what if anything that means!!)

What I notice is when I'm actively doing something (esp. when tired), my breathing is much shallower and more rapid. And, of course this is even more pronounced in hot weather. (But I passed all my lung function tests.)

Sue

jana,


you ask-why have I not been in crisis?

how do you define crisis?

the way you describe it, sounds like you have signficant respiratory muscle weakness and have learned to pace yourself accordingly.

no respiratory test is entirely accurate and right for everybody, and in order to do a proper respiratory evaluation you need multiple tests.

the counting test is a very rough estimate, and obviously a tall man, would be different then a small frail woman. just like other respiratory tests. it is meant for people that are not sure about what is going on, not as a substitue for proper respiratory evaluation.

I believe that if a newly diagnosed patient, who did not get used to the "MG pace" yet, would have the degree of respiratory muscle weakness that you have he/ she would not feel fine.

it sounds like you have very limited respiratory reserves, that you have learned to use wisely. which I think is great.

alice