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

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

AChR positive -- all three antibodies -- binding, blocking, AND modulating -- lucky me -- LOL. Seriously, though, I DON'T take this TOO seriously. I just sort of mosey along -- and do my thing. I have a tremendous faith in God -- I've seen His hand in almost every aspect of this STRANGE journey.

SOOOOO many people have things SOOOO much worse than I do. About once a week, I visit the blog of a young wife whose husband is declining rapidly from ALS. It puts things into perspective, ya know? I have so much to be thankful for -- I NEED to remember and count my blessings.

Funny you should call me a "tough cookie", Nicky. My students used to say that I "didn't play" -- LOL.

I have a mouthguard, too. Didn't do a thing for me, either. I HATED sleeping in that thing!!

I think that my jaw USED to be tight -- but, now, with the Topamax (for my migraines) it is more like "normal". I used to have a LOT of neck tension, too -- also gone -- I credit the Topamax.

I think that IF I was as YOUNG as you are, I "might" be more "freaked" about my breathing -- wanting to RUN and DANCE and be more ACTIVE -- but, I've done all of that -- I'm sort of content to live at a slower pace, now. Age has its benefits.

(((HUGS)))

Gosh, when I read 'bout your experiences, realize how lucky I am...my MG is "limbic"; seronegative which drives my neuro nuts; decremental EMG, which is the only parameter that holds water.....but the exertional dypsnea drives me nuts...been better lately for some unknown reason...for the past 6 mos, after carpal tunnel op, the pain & swelling in my hands was so bad thought it may be RSD....the pain moved up & an MRI showed my shoulders with severe degenerative dis & "shredding", & my hands are still not normal....just had surgery Jan 5th on my left shoulder & things are going well with that, but yesterday, my surgeon told me they had much difficulty intubating me (took an hr & a special tool) & almost scrubbed the surgery...what's up with that?? She also thought the shoulder muscle deterioration is partly due to MG....after 2 drs visits in Jackson yesterday (hour + drive), had therapy early this am. & was doing fine...but now 2 hrs later I'm falling apart with weakness & extreme fatigue, & breathing is dypsneic....Yet all my pulmonary tests are "normal"....'course last one at Jackson clinic, the tech claimed I was normal even tho I almost fell when I got up & couldn't walk 'til they had me sit for a few minutes & catch up...then I walked out...this never got to the neuro....ok, too tired to continue.....oh, got to 17 count.....have good day everyone....

Dottie

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

Alan, I'm so glad you posted about the shoveling. I assume you sort of bend a little at the waist when you shovel? I have a terrible time breathing when when I bend -- maybe something about the diaphragm??

It is so weird, you are right -- to sometimes be ok -- and sometimes not be able to put one foot in front of the other.

It is so nice that you are volunteering -- so heartwarming to hear of things like this!!

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