My breathing -- HUH??
 

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 :)

:hug: 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

:hug:, Alice. See, I think that YOU and MOSHE are RIGHT ON TARGET with this pamphlet thingy. I DO think that I have significant respiratory weakness AND, thank you :D, I believe that you are RIGHT -- I HAVE somehow figured out HOW to "manage" to cope or use my reserves wisely. But, I suspect that I am NOT the only one DOING this -- and somehow this may be OUR "downfall" -- this may be what keeps some docs from taking us seriously.

If I (or you or Joanmarie) is literally one step away from a breathing crisis, yet am somehow able to walk for a mile or two (or see patients or go to the store). I mean, I can almost "understand" the doctor's point of view. One minute FINE -- the next SECOND -- "dying".............it MUST seem kind of odd IF you aren't IN our bodies.

It is like we are walking on a tightrope -- perfectly balanced.......just as long as there is no wind -- no one yells from the crowd below -- no feathers drop from birds overhead and add weight to one side......

I'm 5' 8" tall -- "ain't" nothing FRAGILE 'bout me -- hehehehehe.

I define crisis as being in the hospital for breathing difficulties -- and needing assistance with a ventilator, Bipap, or Cpap.

Hi Jana,

I read your post earlier today, and I thought that it was a great post, but I had to go out, and didn't have a chance to reply...

I'm not sure if I did it right, but I took a deep breath in, then counted as I exhaled. I got to 38.

I think that Alice is right on the money. I think that there are different types of breathing problems in MG, with different rates of decline for each person, and different muscles affected, all which can impact breathing. I think that mine came on slowly and so I've been able to compensate/deal with it using a variety of muscles and movements in order to make sure I get enough breath.

When my tongue and palate became affected, though, I think that something else (not sure what muscle) also became affected and this results in the gasping while I'm talking, but that goes away after the plex. It might be because air excapes from my nose at a faster rate then can be accomodated with in terms of the talking, or again, something else became simultaneously affected which causes the gasping.

Anyway, good thread! :)
Nicky

Totally jealous and SHOCKED by the "38", Nicky. With you being Bulbar, I really didn't expect you to be able to go that far -- YAY for YOU!!!

About that palate thingy -- do you ever swallow and have liquids come out your nose? When this happens to me, I also seem to have the really strong nasal quality to my voice -- AND sort of the "gasping" you talked about -- maybe a flap isn't working?? The rest of the time, I just sound like I've had a stroke -- I think the speech therapist said it was because of my soft palate "falling" (?).

Hi Jana,

I don't know...Maybe I did it wrong...I'm supposed to take a deep breath, then count 'while' I'm exhaling, right? Or do I take a deep breath, exhale all the way, then count as I inhale?

Oh yeah! EVERYTHING comes out of my nose when my speech gets nasal. This is actually kinda gross, and sorry for the image, but since I've developed the tongue/palate weakness, I've vomited, once because of a stomach virus, and another time because I brushed my teeth and gagged. Anyway, both times, all of the vomit came out of my nose...none from my mouth...When I drink liquids, they drool from my mouth (can't close lips all the way) and they come out of my nose...Even food has come out of my nose! lol...

Oftentimes, when I brush my teeth, I check on my throat, and make sure I brush back there because there is always food lodged in the folds where my tonsils are. It's gross, but it's my daily maintanance routine...lol...

I also sound like I've had a stroke all the time too...

Hey, when your voice is nasal, do you ever notice weird ear symptoms? I get a lot of crackling and whooshing when this happens...It makes my speech even worse...

Oh yeah, has your gag reflex ever been paralyzed when your speech was really bad? This used to happen to me all the time...That's one thing that the prednisone got rid of...It happened once when I had an exacerbation, and went to the hospital. I didn't even know about it until the doctor stuck a spatula and touched my ovula, and I didn't respond at all...Kinda scary!

ttys!
Nicky

Jana,

according to your definition, I have had numerous crisises, and even presented my work at a conference during one!!!

that is exactly why I think the word "crisis" is totally outdated. ( I know some would want to kill me for saying that, but I have always said what I think and not what I think people want to hear).

I most likely don't pace myself as well as you do. not that I don't theoreticallhy know how, but as I have said to my neuro recently- if you want to lead a productive life, you can't avoid over-exerting yourself from time to time. I am like a diabetic who is addicted to chocolate cakes. I am asked to present my work in a meeting. I know that this may mean being bed-ridden, connected to my respirator for a few days (although, there is a possiblity that I will able to "get away with it"), and what do I do? go there.

I work two days a week and recover for two days after each work day.
my neuro thinks I shouldn't be working at all like that. I think differently.

I will only stop working, if I think that my patients are getting less then optimal care because of my dissabilities. so far, that has not happened yet. not that I can do everything for them, but I make sure that someone else will.


and Nicky,

I am not surprised at all by your numbers. if I had to guess, from the info. you gave in your posts, I would think that you mostly have airway problems, and much less respiratory muscle weakness. ( the opposite of me).

in order for air to go into your lungs, you not only have to generate a negative pressure in your chest (that being done by your respiratory muscles ), but also have an open path for the air to go from your throat to your lungs. the muscles in your throat/larynx are resposible to keep your airway open, close it when you swallow (so food doesn't go the wrong way) and produce the right tone to your voice. (this is quite complicated, and I don't see myself as an expert in that, so I am just able to explain it sort of superficially).

so it seems that although you have a reasonable strength of your respiratory muscles, the muscles of your larynx and palate are so weak that you have breathing difficulties because of that. that is probably also why you have such a big difference in your vital capacity if you close your nose or not. whereas for me it is only a minor difference.

once you have significant weakness of both your airway protecting muscles and your respiratory muscles you get in trouble.

most neurologists think that you can't have a difference in the weakness of various muscles, but they are wrong.

alice

hi
 

I did the test. I inhaled as deeply as I could then as I was exhaling counted out loud. I started to struggle at 14 but made it to 17. Yikes!

Its also made me really out of breath, so I wont be doing it again!

Love
Rach

OK, example of my breathing....

Last week I fell "up" the stairs {again} but this time I thought I broke something in my leg, it looked "deformed" so hubby took me to E.R. and when they have oxegen meter on, it was reading 98 to 100 but if I moved or spoke it would drop to the 80's. That is how it always goes with me.

Oh and I didn't break anything just had a severe contusion..LOL

Alice,

I agree with you. With MG you have to over-exert yourself in order to be productive sometimes.

I also work two days a week and recover on the days between. Although I don't have any verified breathing problems, I can feel a slight difficulty in breathing on occasion and my heart beats hard, if I overdo it.

The one difference is that my neuro thinks I should be able to work full time and have a "normal" life by taking Mestinon. I have told him that I would like that, but it just doesn't work as much as I try. The two days a week of work seems to be my maximum. I have tried 3 days of work per week and I end up in bed and unable to do regular things (shower,cook meals, comb hair, think clearly, etc...) even with the Mestinon. I explained this to him and he told me to take as much Mestinon as I can without having the overdose symptoms.

It just doesn't work like that. I have a maximum tolerance for Mestinon which allows me to work 2 days per week and I can't get more work out of the Mestinon than that. And I have tried! I would love to work more!

so it's time to change your neuro. he doesn't sound like one that understands either you or MG.

Hi Jana,

I admire and feel for you, lady! You're one tough cookie! I can't believe you're dealing with these sx everyday. I know that we can sorta get used to things and cope, but still...I wish there was a medicine you could tolerate so you could get some relief from these sx because they can be so annoying:hug:

Are you AcHr positive, or muSK (I may have asked you before, but I forgot:o)?

I drink all of the time too...I think that I drink a gallon of water a day, plus weak tea, and anything else...I have a drink on me at all times...I also can't really gargle- comes out of my nose, or I choke, or it comes out of my mouth.

I have TMJ too...Do you have a weak jaw? Mine is super tight, especially when my sx get bad. It feels like there's a clamp on my head keeping it shut. You are right. When I first started to experience this, I mentioned it to my dentist, and he thought that it was my jaw too, so I got a mouthguard, but that didn't help.

That happened to me too once. I got Popeye's chicken (had major craving..lol) and I tried to eat it, and it tasted funny. I had already swallowed it, though. So I panicked (I had just started pred. and was worried about what prednisone + food poisoning would be like), and tried to make myself throw up. I couldn't gag, though. I just prayed that nothing would happen, which it didn't, thank God.

Well, I'm very happy that my diaphragm works alright. I gotta be honest, whenever I see the threads about breathing, I get down and sometimes avoid them because I'm in denial about the breathing. It freaks me out. But I feel a bit better knowing that's not affected so much. But I also feel better knowing that even if things get bad, they can be coped with, and our bodies find ways to compensate. I see this from yours, Joanmaries, Alice's and Rach's example. But I still wish that you ladies could get some true, long-lasting relief. I wish that we all could, without the trade-offs from the medications (other than mestinon).

:grouphug:
Nicky

Hi Jana
Well I'm still confused about our breathing and the different problems we all have and the crisis so glad ive never had one just over a year ago
i had a scary time when i was working i had to shovel some corn in a pit but within a few minutes it became very difficult to breath so i managed to get out and for a few minutes struggled getting my breath i was taking huge breaths but it took time to get back to normal but after that i knew when i was going to have a problem later had the swallowing problem and talking but after going on preds' things improved after a year on them im now off all my drugs and doing okay but if i was to walk fast i would then have a job to breathe saying all that i can sometimes walk miles other times i can't walk at all .
like you its getting to know what works i still volunteer to work for 2 to 3 hours each week
alan:)

Correction on instructions for test
 

You should change the instructions to the test from with to without

thanks,

I realized it was not clear.

could you write it better?

alice

Sorry, but I'm still not sure what exactly you do for the test. Is it basiclly, take in all the air you can, then count how long you can hold your breath?

Thanks,
Pat

Here is a list of average breath holding times for various people/situations:

http://knol.google.com/k/artour-rakh...v4y2tahxi5j/6#

As you can see there are some low numbers reported in some studies for "normal" subjects!

I am sorry, I guess I got you all confused. so let me try and explain it better.

first, this test is a very crude and inacurate test, and is only meant to give you a general idea, in case you have non-specific symptoms and want to see if it may be related to respiratory muscle weakness.

it is not a breath holding test ( I am sorry but I am not familiar with the test on the link of MRs D, and can't comment on its utility or accuracy), but more assesment of the vital capacity. (although obviously much less accurate then a formal test).

what you do, is take in the deepest breath that you can and then count outloud as much as you can (basically while you exhale), without taking another breath in. this way you sort of check how much air you can get into your lungs, when you do a maximal effort of breathing in.

hope this is more clear.

alice

Thank you Alice! I tried it 3 times and got 54, 56 & 61. ;)

Hugs,
Pat

Wow - big difference between the counts of:

inhaling and holding....52 and 55

inhaling and count while exhaling.....27 and 24

It's like when a dam breaks...once I start exhaling - there goes the air!!

Sue

Thanks Mrs. D! I wasn't quite sure how to do this test, so I did it two ways 3 times each.

Took a deep breath while pinching my nose and holding it as long as I could:
45, 44, 45 seconds.

Took a normal breath, exhaled and held breath with what air was left:
15, 15, 20 (this way made me dizzy)

Counted how many breaths I take per minute:
12, 12, 13

Pat