[korbi_doc]

Wow Pat, your comment on the "treadmill" just caused a hindsight moment for me...the last 2 treadmill tests I did while I was still in NJ, my cardiologist stopped me because he said I was getting dypsneic...ie. difficulty breathing & shortness of breath.....that was long ago, have to look up the dates...was probably one of the missed signs of this undiagnosed problem I always knew I had...did wonder at the time why he said that, I didn't even realize it....must've just gotten used to the exertional response.....(my mg is totally "limbic" or generalized, no bulbar signs, thank heavens....

Dottie

[Brennan068]

I developed MG in the fall of '07 - symptoms were light and only showed up when I was very tired... they went away after sleep so were attributed to just being tired. By the spring of '08 I had full blown ptsosis on left side, marble mouth and couldn't swallow much of anything. I was diagnosed in April of '08, had my thymectomy in May of '08 and spent until last week recovering from the thymectomy, radiation therapy for the thymoma, pneumonias from the radiation burns and excessive weight loss.

The ptsosis went away immediately with the thymectomy. It was gone before I was out of hospital. The marble mouth was next to go at around 6-7 months or so and the swallowing is gradually getting better over time. I constantly try things that were "impossible" a few months ago to find that they work fine now. Spicy foods still jam up the swallower though... that'll come with time

Last week I started a graduated return to work; half days for a month. I'll be moving up to 6 hour days in 3 weeks and do that for a month and then to full 8 hour days. The 4 hour days are great . Go in for 8, go to the gym at 12 and then home to sit on my deck in the sun with a cool beer.

Brian

Originally Posted by Pat 110

Hey Brennan,

I'm pretty new here so I'm not familiar with your situation. I use to have the choking & swallowing problem a lot, but fortunatly it only sneeks up on me once in a while now. Of course you don't know when it's going to happen. I love Thai food too, but I can't eat it anymore...not because of the MG...it's an age thing now! When did you have your Thymectomy? I had mine in Nov.02

Pat

[Pat 110]

Originally Posted by korbi_doc

Wow Pat, your comment on the "treadmill" just caused a hindsight moment for me...the last 2 treadmill tests I did while I was still in NJ, my cardiologist stopped me because he said I was getting dypsneic...ie. difficulty breathing & shortness of breath.....that was long ago, have to look up the dates...was probably one of the missed signs of this undiagnosed problem I always knew I had...did wonder at the time why he said that, I didn't even realize it....must've just gotten used to the exertional response.....(my mg is totally "limbic" or generalized, no bulbar signs, thank heavens....

Dottie

Hey Dottie,

Isn't it amazing how someone says something and you get one of those, 'Wow' moments?! I've had a few myself. Hope you are feeling well.

Pat

[Pat 110]

Originally Posted by Brennan068

I developed MG in the fall of '07 - symptoms were light and only showed up when I was very tired... they went away after sleep so were attributed to just being tired. By the spring of '08 I had full blown ptsosis on left side, marble mouth and couldn't swallow much of anything. I was diagnosed in April of '08, had my thymectomy in May of '08 and spent until last week recovering from the thymectomy, radiation therapy for the thymoma, pneumonias from the radiation burns and excessive weight loss.

The ptsosis went away immediately with the thymectomy. It was gone before I was out of hospital. The marble mouth was next to go at around 6-7 months or so and the swallowing is gradually getting better over time. I constantly try things that were "impossible" a few months ago to find that they work fine now. Spicy foods still jam up the swallower though... that'll come with time

Last week I started a graduated return to work; half days for a month. I'll be moving up to 6 hour days in 3 weeks and do that for a month and then to full 8 hour days. The 4 hour days are great . Go in for 8, go to the gym at 12 and then home to sit on my deck in the sun with a cool beer.

Brian

Wow, you've come a long way...good for you! You have a great attitude which goes a long way in the recovery process. Being active is something I've slacked on, but I'm starting to walk around the nieghborhood which is a good start. Going back to work may tire you for awhile, so get lots of rest. I have the feeling you're going to be eating that Tia food in the very near future!

Take care,
Pat

[erinhermes]

Stephanie - what a GREAT idea! Look @ go, girl! This is AWESOME!!!!!!!

I am tired of being tired! I have been sleeping 14-16 hours and wake up tired! Granted, I'm sure it has something to do with my 4 teeth that are infected, but I am getting sick of it!

At least I was able to give Mike a bday party! Yay!

He was soooo cute! You should have heard him! What a hubby!

I go back to the hospital on June 1st for my last round of IV IG and my pred is going to be reduced to 20 mgs a day, so hopefully I will start to look like myself again - I've got to lose those "pesky" 40 lbs that I have gained! LOL

I hope everyone is having a good, STRONG day!

Big hugs!
Erin

[erinhermes]

Isn't it amazing how far you have come? What an inspiration for the rest of us! I love to hear stories like yours - they always give me HOPE!!!!!!!

So, you are finally given the green light to return to work? I bet you are going to have a blast! I know I miss it, but right now it just isn't an option - just too hot here for me to get out...........

I know what you mean about the thai food - used to love spicy food but cannot handle it now - I wonder why?

Big hugs!
Erin

Originally Posted by Brennan068

I developed MG in the fall of '07 - symptoms were light and only showed up when I was very tired... they went away after sleep so were attributed to just being tired. By the spring of '08 I had full blown ptsosis on left side, marble mouth and couldn't swallow much of anything. I was diagnosed in April of '08, had my thymectomy in May of '08 and spent until last week recovering from the thymectomy, radiation therapy for the thymoma, pneumonias from the radiation burns and excessive weight loss.

The ptsosis went away immediately with the thymectomy. It was gone before I was out of hospital. The marble mouth was next to go at around 6-7 months or so and the swallowing is gradually getting better over time. I constantly try things that were "impossible" a few months ago to find that they work fine now. Spicy foods still jam up the swallower though... that'll come with time

Last week I started a graduated return to work; half days for a month. I'll be moving up to 6 hour days in 3 weeks and do that for a month and then to full 8 hour days. The 4 hour days are great . Go in for 8, go to the gym at 12 and then home to sit on my deck in the sun with a cool beer.

Brian

[Pat 110]

[QUOTE=erinhermes;511830][FONT="Book Antiqua"][SIZE="3"][COLOR="DarkGreen"]Stephanie - what a GREAT idea! Look @ go, girl! This is AWESOME!!!!!!!

I am tired of being tired! I have been sleeping 14-16 hours and wake up tired! Granted, I'm sure it has something to do with my 4 teeth that are infected, but I am getting sick of it!

At least I was able to give Mike a bday party! Yay!

He was soooo cute! You should have heard him! What a hubby!

I go back to the hospital on June 1st for my last round of IV IG and my pred is going to be reduced to 20 mgs a day, so hopefully I will start to look like myself again - I've got to lose those "pesky" 40 lbs that I have gained! LOL
I hope everyone is having a good, STRONG day!

Big hugs!
Erin
Hey Erin,

Glad to hear your last round is coming up and the pred is being reduced. You'll be looking like you old self before you know it! Hang in and feel better soon.

Pat

[redtail]

I'm heading off to my Sisters to babysit dogs for a couple of days, so will be offline for a few days. Will be back at the end of the week.

[erinhermes]

Have a GREAT time at your sister's place! You will be missed!

Big hugs!
Erin

Originally Posted by redtail

I'm heading off to my Sisters to babysit dogs for a couple of days, so will be offline for a few days. Will be back at the end of the week.

[erinhermes]

Hi Pat!

Thank you for your kind words! I really appreciate them! Just feeling sorry fo myself today - hate that feeling! Should be doing something "useful" with my time - just don't have the energy!

If I don't feel better by tomorrow, I'm gonna call my neuro and see if I can have my IV IG bumped up to next week! I love that man!

How are you feeling?

Big hugs!
Erin




[QUOTE=Pat 110;511838]

Originally Posted by erinhermes

[FONT="Book Antiqua"][SIZE="3"][COLOR="DarkGreen"]Stephanie - what a GREAT idea! Look @ go, girl! This is AWESOME!!!!!!!

I am tired of being tired! I have been sleeping 14-16 hours and wake up tired! Granted, I'm sure it has something to do with my 4 teeth that are infected, but I am getting sick of it!

At least I was able to give Mike a bday party! Yay!

He was soooo cute! You should have heard him! What a hubby!

I go back to the hospital on June 1st for my last round of IV IG and my pred is going to be reduced to 20 mgs a day, so hopefully I will start to look like myself again - I've got to lose those "pesky" 40 lbs that I have gained! LOL
I hope everyone is having a good, STRONG day!

Big hugs!
Erin
Hey Erin,

Glad to hear your last round is coming up and the pred is being reduced. You'll be looking like you old self before you know it! Hang in and feel better soon.

Pat