[cricket001]

How about we try this? Maybe everyone can check in and let us know what's going on with you...using this thread.

[redtail]

Hey
Stephanie, great idea.
I will start, as I'm having a really icky day. Its comming up to that time of the month, and my body is just not working properly, fingers don't want to type, and just getting up and dressed thismorning was an effort!!!!! All I want to do now is cry, have a really good bawl................which will pass, but its good to come here and put it all down, somehow it makes me feel a little better.
think I'll go water my garden now
Kate

[cricket001]

Kate,
I am so sorry you have had a bad day!...but you are right...It makes me feel better to write it down and share with people who understand!

Originally Posted by redtail

Hey
Stephanie, great idea.
I will start, as I'm having a really icky day. Its comming up to that time of the month, and my body is just not working properly, fingers don't want to type, and just getting up and dressed thismorning was an effort!!!!! All I want to do now is cry, have a really good bawl................which will pass, but its good to come here and put it all down, somehow it makes me feel a little better.
think I'll go water my garden now
Kate

[Pat 110]

Originally Posted by redtail

Hey
Stephanie, great idea.
I will start, as I'm having a really icky day. Its comming up to that time of the month, and my body is just not working properly, fingers don't want to type, and just getting up and dressed thismorning was an effort!!!!! All I want to do now is cry, have a really good bawl................which will pass, but its good to come here and put it all down, somehow it makes me feel a little better.
think I'll go water my garden now
Kate

Hey Kate,
Hope you are having a better day today...crying is a good way to relieve stress!
Pat

[AliceH]

Hubby started on mestinon and prednisone week before last. The prednisone's making him emotional, and he's got a viral upper respiratory infection that started Friday. I'm nervous for him. The mestinon dosage is only somewhat alleviating the ptosis. He goes in for a rep stim test next Friday to determine whether it's ocular or generalized. Still waiting on insurance approval for the chest CT and the brain MRI.

He's had a couple of short periods of time when he's had trouble talking, his words slur, we don't know if it's the medications or a new symptom.

[redtail]

Hi Alice, yep pred can do all sorts of wierd things. With respiratory infections, better to get to a dr and get it sorted out, so breathing doesn't become a problem. What dosage of mestinon is he on, and can he speak to the prescribing dr to see if he can up the dosage??

I know when Iam tired, fatigued my speach can become slurred.
Kate

[AliceH]

I took him to urgent care today as a precaution, they didn't seem TOO concerned (concerned enough to check his oxygen levels, said we weren't overreacting, but said he just needs to rest and drink fluids and take steamy showers). We're meeting with the neuro before the rep stim test on Friday to discuss whether he's going to stay on prednisone long-term (which may be moot if the rep stim test shows he's got generalized MG), we're going to ask him about his mestinon levels then. He's on 60mg three times a day, just as a trial. His neuro doesn't believe in doing Tensilon, so the mestinon was also for diagnostic purposes. From what I've read, prednisone can interfere with mestinon working.

He wasn't fatigued when his speech was slurring, the first time it was fairly early in the day. The second time was on a business trip, I can't speak to his fatigue levels then, but I don't think he got enough sleep the entire trip.

[Pat 110]

Originally Posted by AliceH

I took him to urgent care today as a precaution, they didn't seem TOO concerned (concerned enough to check his oxygen levels, said we weren't overreacting, but said he just needs to rest and drink fluids and take steamy showers). We're meeting with the neuro before the rep stim test on Friday to discuss whether he's going to stay on prednisone long-term (which may be moot if the rep stim test shows he's got generalized MG), we're going to ask him about his mestinon levels then. He's on 60mg three times a day, just as a trial. His neuro doesn't believe in doing Tensilon, so the mestinon was also for diagnostic purposes. From what I've read, prednisone can interfere with mestinon working.

He wasn't fatigued when his speech was slurring, the first time it was fairly early in the day. The second time was on a business trip, I can't speak to his fatigue levels then, but I don't think he got enough sleep the entire trip.

Hi Alice,
Slurred speach was a major symptom for me even when I wasn't fatigued. Sounds like he's on the right track and with your love & support things will get better...it takes time.
Pat

[shihan]

PLEASE dont listen to the people at urgent cares! a steamy shower? a hot shower put me into crisis one time. extreme heat/ cold will make any MG problem worse. rest is best.

[maryec]

So happy my back is better ! It's like a breath of fresh air ! lol.... So, I have been weeding out closets, & getting after my yard, it's a jungle out there after all that rain !
I am so happy things have come together for you Becky, & thank you for sharing the information with all of us !
Mary