[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

[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.

[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

[cricket001]

Alice,
He will experience many different things....just be patient and loving...My hubby has been there for me...and that has meant the world to me. I truly know what "love" feels like!
I have trouble with my speech and I slur at night...or "mumble" as my hubby says. My tongue feels big and I just can't form my words well...

Right now, I think I am in the honeymoon phase because the IVIG has kicked in/ side effects from IVIG gone... and I have energy...just do not know how long it will last...before I slow down and need another treatment. I haven't felt like myself in a long time...and I have been myself for 2-3 days now!

Stephanie

Originally Posted by 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.

[Brennan068]

LOL Marble mouth, I know it well . Mine took about 6 months to completely go away after the thymectomy.

Originally Posted by cricket001

Alice,
He will experience many different things....just be patient and loving...My hubby has been there for me...and that has meant the world to me. I truly know what "love" feels like!
I have trouble with my speech and I slur at night...or "mumble" as my hubby says. My tongue feels big and I just can't form my words well...

Right now, I think I am in the honeymoon phase because the IVIG has kicked in/ side effects from IVIG gone... and I have energy...just do not know how long it will last...before I slow down and need another treatment. I haven't felt like myself in a long time...and I have been myself for 2-3 days now!

Stephanie

[ras1256]

Hi All -
I've had my granddaughter this weekend and we played a game, cooked breakfast together, laid around watching TV together..... had a wonderful weekend! I'm so glad we got me lined out enough to do all this before she moves to Minnesota in two weeks. Since the end of January every time she came to stay it was me on the recliner and she and her Papa doing stuff. She was very understanding, but I can tell it upset her that I was so bad (she's 9, going on 13).

Stephanie - I'm so glad the IVIG has worked for you after all! See, you can feel better with MG!!!

Kate - Sorry you're having troubles - that's one good thing about being OLD - I don't have the monthly drain anymore!

Alice - The slurred speech is a common problem with MG. I generally have to get real tired before that starts on me, but I know a guy that the eyes & slurred speech are his normal symptoms that start right away when he's having problems. I hope the neuro has a good answer for your honey on this! Where did you read about the Pred. interfering with the Mestinon? I've not heard that one before, and it's a very common treatment combination early on. I'd be interested in seeing the website if you can remember. Also, which urgent care did you go to? Were they familiar with MG? or just looking at his condition as a possible flu. I work close to your area, so it would be good to know if they are familiar with MG.

Brennan - I haven't had a lot of interaction with you, but I hope you're doing real well!

Hope all are either doing well, or get better soon! I'm in heaven to have such a quick turn around on myself. I have needed to take Mestinon in the afternoon is all, and still take naps, but WOW - am I better!

[ConnieS]

Wow great idea Stephanie!

Am having a lot of problems typing now, used to be able to type very fast without having to stop or press backspace for typo errors but have to do it a lot now.. Energy's like a roller coaster, am surviving, but I get so excited whenever I feel like I have enough energy for a walk outside. Even rolling around on my wheelchair's an effort now, arms are becoming weaker.

But life's great, thank God I can still swallow without much difficulty and my face seems to be becoming more symmetrical, instead of one side drooping.. Lol.