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
Are you AcHr positive, or muSK (I may have asked you before, but I forgot
)?
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).
Nicky
Quote:
Originally Posted by jana
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.
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