[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.

[maryec]

My sons 30th birthday was Sat., he lives in AZ though, I got my hair cut short, all the highlights are gone now. Sun, hubby brought me to the new Ikea, just built here in FL., it ended up being to much for me to do, & am stove up today. Well the old saying goes, If your gonna play you , you have to pay, & pay I am !!! Neuro's office dropped the ball, on setting up my IV pred. treatment, I am seeing him wed. the 20th, & will bust them though. I used to stay on them , & had to deal with there attitudes when I called, I'm not doing there job for them anymore, & will just tell the Neuro, I never got the treatment, let him deal with them. Still eating as much as I can, to try & keep from loosing wieght, I think it is muscle loss though, as I have fat on me. Which would go along with the neuropathy, & myopathy found, also the trouble with my malabsorbtion.
Great Idea for this thread, Stephanie !!!
Mary

[Pat 110]

Originally Posted by maryec

My sons 30th birthday was Sat., he lives in AZ though, I got my hair cut short, all the highlights are gone now. Sun, hubby brought me to the new Ikea, just built here in FL., it ended up being to much for me to do, & am stove up today. Well the old saying goes, If your gonna play you , you have to pay, & pay I am !!! Neuro's office dropped the ball, on setting up my IV pred. treatment, I am seeing him wed. the 20th, & will bust them though. I used to stay on them , & had to deal with there attitudes when I called, I'm not doing there job for them anymore, & will just tell the Neuro, I never got the treatment, let him deal with them. Still eating as much as I can, to try & keep from loosing wieght, I think it is muscle loss though, as I have fat on me. Which would go along with the neuropathy, & myopathy found, also the trouble with my malabsorbtion.
Great Idea for this thread, Stephanie !!!
Mary

Hey Mary,
Sorry to hear they messed up your treatment. I know what you mean about the attitudes when you call an office. Not easy to deal with when you're not feeling good. Good luck with the eating...I have the opposite problem. (: Feel better.
Pat

[Maxwell'sMom]

I've been Over-whelmed to say the least. For the past 9 weeks now, I've had at the very least one appointment per week. But for the most part, it's more than one. One usually kills me, but like last week, I had two doctors appointment, and then on thursday a Kidney biopsy.

Tomorrow, I have an Iron Infusion (1 1/2 hours for infusion) And then I have a doctors appointment with my neuro afterwards. Iron infusions can make a person feel like they have the flue for a day or so. Not a good feeling.

I'm not seeing an end to all the medical stuff right now. In a couple weeks, I have to have another exercise stress echo ( a specail echo done to check pulmonary pressures) I dread this one, it knocks me right off my feet for days on end.

And in the mist of Kidney testings, infusions, and regular appointments, I have to have a root canal, gums scraped..thank you prednisone for that one. I just can't seem to get a head of it all. Too much! Just too much.

So, I guess, I'm tired. Really tired, and don't have much energy right now. Every time I refill, I have to drain it out.

thanks for listening
Love Lizzie

[Pat 110]

Originally Posted by Maxwell'sMom

I've been Over-whelmed to say the least. For the past 9 weeks now, I've had at the very least one appointment per week. But for the most part, it's more than one. One usually kills me, but like last week, I had two doctors appointment, and then on thursday a Kidney biopsy.

Tomorrow, I have an Iron Infusion (1 1/2 hours for infusion) And then I have a doctors appointment with my neuro afterwards. Iron infusions can make a person feel like they have the flue for a day or so. Not a good feeling.

I'm not seeing an end to all the medical stuff right now. In a couple weeks, I have to have another exercise stress echo ( a specail echo done to check pulmonary pressures) I dread this one, it knocks me right off my feet for days on end.

And in the mist of Kidney testings, infusions, and regular appointments, I have to have a root canal, gums scraped..thank you prednisone for that one. I just can't seem to get a head of it all. Too much! Just too much.

So, I guess, I'm tired. Really tired, and don't have much energy right now. Every time I refill, I have to drain it out.

thanks for listening
Love Lizzie

Hi Lizzie,

Wow! I am so sorry you have to deal with sooo much stuff all at the same time. You must be exhausted. Try to rest as much as you can. You know we're all pulling for you and I'll keep you in my prayers. Hang in there!

Thanks for sharing,
Pat

[Maxwell'sMom]

Thank you Pat, I sure appreciate those prayers.

Love Lizzie

[ConnieS]

Hey dear, how are u feeling today? Sorry to hear about all that you're going through, here's a big for you. I can understand what you mean by there seems to be no end to the appointments, but hang on! Am sure it'll all be sorted out soon. Will be praying for u too!

Originally Posted by Maxwell'sMom

I've been Over-whelmed to say the least. For the past 9 weeks now, I've had at the very least one appointment per week. But for the most part, it's more than one. One usually kills me, but like last week, I had two doctors appointment, and then on thursday a Kidney biopsy.

Tomorrow, I have an Iron Infusion (1 1/2 hours for infusion) And then I have a doctors appointment with my neuro afterwards. Iron infusions can make a person feel like they have the flue for a day or so. Not a good feeling.

I'm not seeing an end to all the medical stuff right now. In a couple weeks, I have to have another exercise stress echo ( a specail echo done to check pulmonary pressures) I dread this one, it knocks me right off my feet for days on end.

And in the mist of Kidney testings, infusions, and regular appointments, I have to have a root canal, gums scraped..thank you prednisone for that one. I just can't seem to get a head of it all. Too much! Just too much.

So, I guess, I'm tired. Really tired, and don't have much energy right now. Every time I refill, I have to drain it out.

thanks for listening
Love Lizzie