[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

[Pat 110]

Originally Posted by 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

Hey Mary,

So happy to hear your back is better! When you finish with your closets do you want to come over and weed out mine?

Hugs,
Pat

[maryec]

Funny lady Pat !! LOL......All this rain, has me cleaning !
Mary

[redtail]

Hi All

you go away for a for a week and the board fills up, and heaps of new people are around. Its good to see!

I had a great time at my Aunties, talked lots, went shopping and spent lots of time with her and her daughters just hanging out.

My mg played up a little, most frustrating!!!!!! I will catch up with all the posts over the next few days
Kate

[Brennan068]

Three weeks down of 4 hour days at work, one more week to go then I get to "stretch" to 6 hour days. I must say working 1/2 time and getting full time pay is sweeeet.

The gym has continued to be great for me, my physio has upped the stakes adding in a bunch of new exercises to mix it up and push me a little more. I have also gone back to my old Tai Chi instructor to start that up again. I did it for 5 years then stopped for 4.... it is enjoyable to be able to get back to it. Tai Chi is great exercise if you don't have generalized MG but I would not recommend it for those who do; there is a lot of putting your weight on one bent leg and holding position for extended periods of time.

Increased muscle mass and tone has allowed me to put on some of the weight I have lost; I'm still mostly fat free though. Up to 125lbs now (heh, "up to..." before MG I was desperate to get "down to").

My MG is well controlled and feels like I may be close to remission. Eating is much better, but there continue to be some problem foods. It is funny, Crab, Lobster and shrimp - before MG I never noticed the difference in consistency and actually thought they were quite similar. Crab slides down without effort, Shrimp I cannot eat much of before it tires my swallower out and Lobster is about half way between. They all remain yummy and worth the effort though.

As far as meds go: I'm sticking with my 90mg 3x a day Mestinon for now, I'll discuss with my neuro at our next meeting (probably July or August) to see what he thinks of my reducing it back down to 60.

2009 is way more better than 08 for me; at least so far.

[erinhermes]

Hi Mary! I am so happy for you! I know I love to clean when I feel better! MY OCD kicks in and there I am vaccuming the ceiling (like that TV show, Monk). I hope to get my closet cleaned and organized next week. Love that IV IG "high"!I've done some hard core shopping since I've gained all my weight, so now my closet is jammed packed with really cute clothes, though I can't wear alot of them due to the weight gain! I'll get there! As long as I'm strong I'm good to go!

Hope this finds you strong!
Big, big hugs!
Erin

Originally Posted by maryec

Funny lady Pat !! LOL......All this rain, has me cleaning !
Mary

[Maxwell'sMom]

Alice,
A Steamy shower can cause him to exascerbate even further.
I'm so sorry he's having a tough time right now.
Much love Lizzie