, 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 , 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

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

OH MY GOODNESS!! I've never talked to another MGer with these same "oral" problems. I always vomit through my nose, now -- arrgghh. It is so disgusting to have bits of food come out that way. The bits seem to go on and on as you blow your nose for a couple of days afterwards. *sigh*

I have food ALL over my mouth -- around my teeth, tonsils, EVERYWHERE -- and my tongue doesn't work really well at keeping it where it is supposed to go. But, since I drink all of the time, I am sort of cleansing it and swishing it down, I guess -- like you do at the dentist's office.

I have NO gag reflex AT ALL. When I was taking Claritin, I accidently took TWO one morning -- FREAKED and tried to make myself THROW UP by gagging with the end of my toothbrush -- NO GAG. I called the pharmacist, he said two wouldn't hurt me.

YES, I have those noises in my ears -- but, I thought it was because I have NO jaw joints AT all. My TMJ joints have totally disintegrated -- in fact that is what they thought was wrong with me at first, before it was discovered that I have MG.

I also cannot GARGLE -- my lips don't close well, either -- I DROOL on my pillow at night -- I "snarl" when I try to smile.

BTW, yes, I "think" you are supposed to count AS you EXHALE -- that is what I did.

YES, you need to make NOTE of this Rach!! This is significant -- the NEXT time you do this should be IN a doctor's office!!

AH-HA!! I'm gonna do THIS next time -- TALK while the pulse ox thingy is on!!!

So sorry you got hurt, Joanmarie, but, so GLAD it wasn't a break!!