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-   -   How quickly did all of you get sick with MG? (https://www.neurotalk.org/myasthenia-gravis/54461-quickly-sick-mg.html)

erinhermes 09-18-2008 01:13 PM

Yep, 16. He is HUGE - 6'2"-6'3" and is just gorgeous! We have some problems @ home too - we call him the "pit bull" cuz' he won't let things go - ever, but other than that, it's great! He hasn't shown any interest so far in driving. I guess he prefers me taking him all over town:D. Quite frankly, I prefer driving him. He gets a little nervous @ times.......I've taken him around, but he gets behind the wheel and just starts shaking.......poor baby............

Take care!
Erin






Quote:

Originally Posted by MissyGirl (Post 370890)
Interesting. You're the third mom with MG with a child with autism spectrum disorder that I've met. Of course ASD is so darned common these days...

Sixteen, huh? I dread the teen years with my dd. Already she is maturing so fast. The thought of her ever driving scares the pants off of me. She has done VERY well (I use biomedical treatments) and has always been in regular school/classes with no supports but the ASD is still there. Very, VERY challenging behaviors at home. I worry about her constantly. I understand the "literal life." We're living it, too.

Missy


MissyGirl 09-18-2008 01:25 PM

I've got a "female pit bull"--it gets soooooo tiring. Every day is a new day, same old issues. My dd is 5' 3", leggy, beautiful and totally buff as she's a competitive swimmer---and GOOD, too. The exercise helps take the edge off of her hyperness. We've just begun the "pubertal growth spurt" and all of the hormones are beginning to flow. Not fun at all---except for her swimming which is definitely benefitting from her newfound strength.

Hang in there!

Missy

erinhermes 09-18-2008 04:29 PM

Yeah, it IS exhausting! Devon will argue simply for the sake of argument. Don't get me wrong, he's a great kid, but he sometime drives me nuts! Devon's "outlet" is the computer - WOW especially - or World of Warcraft to us laymans....He hyperfocuses on his game and I have to drag him off daily - it can be so very annoying. He has also had problems with autoimmune disorders: alopcia, exzema, shingles, etc. and wants to be tested for autoimmune problems now. My dr. is drawing up the paperwork, since not many young kids get shingles. My mom ALSO has autoimmune problems (just like Devon's) plus she has had symptoms of MG for years, but won't get it checked out - don't ask me why.....I just hope and pray that Devon is OK - I know this sounds nuts, but I would feel really guilty if he ever comes down with MG, though I know the chances are slim. It really irritates him when I try and tell him about MG, so I'm just going to leave him alone for now. It scared him when I was so sick. I was always so strong b/4 I became ill (think about a woman with OCD who repaints her whole house over the weekend and then gardens - I wonder if that contributed to my getting so ill so quickly - were you the same way b/4 u became ill? I just can't stand to stay in bed all the time, so getting out and finally being able to work has really been a blessing for me.........Gotta go for now and get my house ready for tomorrow!

Hang in there!!!!!

Erin
Quote:

Originally Posted by MissyGirl (Post 370948)
I've got a "female pit bull"--it gets soooooo tiring. Every day is a new day, same old issues. My dd is 5' 3", leggy, beautiful and totally buff as she's a competitive swimmer---and GOOD, too. The exercise helps take the edge off of her hyperness. We've just begun the "pubertal growth spurt" and all of the hormones are beginning to flow. Not fun at all---except for her swimming which is definitely benefitting from her newfound strength.

Hang in there!

Missy


erinhermes 09-18-2008 04:57 PM

Have you noticed your face swelling up in the Texas heat? Mine swells to almost twice it's size on really hot days! Have you gained weight due to the steroids? Do you have really weird cravings since the steroids? Just curious...



Quote:

Originally Posted by erinhermes (Post 371074)
Yeah, it IS exhausting! Devon will argue simply for the sake of argument. Don't get me wrong, he's a great kid, but he sometime drives me nuts! Devon's "outlet" is the computer - WOW especially - or World of Warcraft to us laymans....He hyperfocuses on his game and I have to drag him off daily - it can be so very annoying. He has also had problems with autoimmune disorders: alopcia, exzema, shingles, etc. and wants to be tested for autoimmune problems now. My dr. is drawing up the paperwork, since not many young kids get shingles. My mom ALSO has autoimmune problems (just like Devon's) plus she has had symptoms of MG for years, but won't get it checked out - don't ask me why.....I just hope and pray that Devon is OK - I know this sounds nuts, but I would feel really guilty if he ever comes down with MG, though I know the chances are slim. It really irritates him when I try and tell him about MG, so I'm just going to leave him alone for now. It scared him when I was so sick. I was always so strong b/4 I became ill (think about a woman with OCD who repaints her whole house over the weekend and then gardens - I wonder if that contributed to my getting so ill so quickly - were you the same way b/4 u became ill? I just can't stand to stay in bed all the time, so getting out and finally being able to work has really been a blessing for me.........Gotta go for now and get my house ready for tomorrow!

Hang in there!!!!!

Erin


MissyGirl 09-18-2008 06:46 PM

Yes, I was very active prior to MG. Did a lot, plus worked full time until my dd was born, then 3 mornings a week after. Loved to garden, cook, throw parties, walk daily, you name it. Seems a lifetime ago now.

I don't have swelling issues, but I did when I was on higher pred doses. Try upping potassium (I used capsules).

I never have had much problem with weight gain with pred. Gained about 15 pounds at one point, but lost it easily. Right now I'm a bit underweight due to the dysphagia. I'm currently very depressed, too, which is an appetite killer for me as well.

My dd loves puter, too. Webkinz and Stardolls keep her occupied. We have to totally restrict her during the schoolweek or she's impossible.

Catcha later.

C

erinhermes 09-19-2008 10:49 AM

That's yet another thing that is so unfair about MG.........Not being able to "do" anything....I miss it so much! I guess I never realized how lucky I was until I got so sick - totally sux! I did have a good morning, though; up @ 5:00 working on my house for the stupied camera crew - they are still here by the way, but if it helps my huuby then it's worth it. I am going to go to sleep as soon as they leave - can't wait for that! I will definitely pick up potassium today - thanks for the tip. I have these terrible cold sores that will not go away, so my neuro prescribed Valtrax for me - isn't that for herpes - genital herpes? If so, my hubby will be picking up THAT prescription:D..............I have no dignity left! My weight has really given ,me a complex recently, but @ least I can swallow, so I guess I should be happy, but I just want to look like ME again - does that sound vain? Stupid? Well, I'd better go for now - check in with me when you get some time!


Erin
Quote:

Originally Posted by MissyGirl (Post 371171)
Yes, I was very active prior to MG. Did a lot, plus worked full time until my dd was born, then 3 mornings a week after. Loved to garden, cook, throw parties, walk daily, you name it. Seems a lifetime ago now.

I don't have swelling issues, but I did when I was on higher pred doses. Try upping potassium (I used capsules).

I never have had much problem with weight gain with pred. Gained about 15 pounds at one point, but lost it easily. Right now I'm a bit underweight due to the dysphagia. I'm currently very depressed, too, which is an appetite killer for me as well.

My dd loves puter, too. Webkinz and Stardolls keep her occupied. We have to totally restrict her during the schoolweek or she's impossible.

Catcha later.

C


MissyGirl 09-19-2008 01:02 PM

I stopped worrying about the weight gain when I discovered that some people with MG on the lists I would visit had gained 150 pounds or more on pred. Puts things into perspective really fast.

Maxwell'sMom 09-19-2008 01:02 PM

I'm not sure how long I had MG before I was diagnosed. I had several years of rehab from a car accident, and a couple of Back surgeries. Trying to do the rehab was horrible. I kept feeling like was was weakening rather than improving. I thought because I have bi-lateral nerve damage, it was just the nerves getting inflamed, or worse. I then started to have problems with swallowing, so I told my doctor about all the new stuff that was happening, and she was on the ball, and got me to the neuro.
I actually thought my Neuro was full of bunk, and was way off, as the only thing I could find on MG at that time was Ocular, and up until them, I hadn't had any problems with my site. Since then, many many times.
I was diagnosed through a tensilon, and was sero-neg at first, but last year tested again, and was positive. I've was diagnosed in 2004, but believe I've had a certan degree of MG for many many years before that.
It's a very complicated disease.
Best of Wishes
Lizzie

erinhermes 09-19-2008 03:18 PM

No joke! I guess I won't be complaining about weight gain again........Thanks for the info........I cannot imagine gaining 150 lbs, and I'm whining about 15-20 - what a joke!:D


Quote:

Originally Posted by MissyGirl (Post 371646)
I stopped worrying about the weight gain when I discovered that some people with MG on the lists I would visit had gained 150 pounds or more on pred. Puts things into perspective really fast.


erinhermes 09-19-2008 03:25 PM

Yeah, this darm disease is very complicated and everyone seem to have different side effects to all the meds. I've been very lucky so far. My hemo told me that he'd never seen someone do so well being on steroids for as long as I have - my mestinon hasn't given me too many problems and aside from my moon face and slight weight gain, the prednisone has been FABULOUS! I am now on cellcept as well - my doc is trying to wean me off the steroids, we'll see how that goes...........I've been really lucky so far! Anything is better than where I was @ 6 months ago..........:DI've been able to work, eat, sleep and BREATHE - AMEN! This is a really scary disease, though. There just doesn't seem to be a lot of knowledge in the medical community regarding it, though my GP knew what it was when I came in with my list o' symptoms and called a neuro that day to set up my appt. - I still send her flowers - she is simply the best dr. ever! We are both very lucky to have such good drs, aren't we? Take care!

Erin:D
Quote:

Originally Posted by GodDreamer2007 (Post 371647)
I'm not sure how long I had MG before I was diagnosed. I had several years of rehab from a car accident, and a couple of Back surgeries. Trying to do the rehab was horrible. I kept feeling like was was weakening rather than improving. I thought because I have bi-lateral nerve damage, it was just the nerves getting inflamed, or worse. I then started to have problems with swallowing, so I told my doctor about all the new stuff that was happening, and she was on the ball, and got me to the neuro.
I actually thought my Neuro was full of bunk, and was way off, as the only thing I could find on MG at that time was Ocular, and up until them, I hadn't had any problems with my site. Since then, many many times.
I was diagnosed through a tensilon, and was sero-neg at first, but last year tested again, and was positive. I've was diagnosed in 2004, but believe I've had a certan degree of MG for many many years before that.
It's a very complicated disease.
Best of Wishes
Lizzie



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