[Pat 110]

Originally Posted by TxSimon

I just wanted to echo the thanks for all the inspiration I am getting from all the posts. I am new here, but am getting more acquainted as I go. God Bless each of you for your posts, as they help!
Simon

Hi Simon,

Welcome to the group! I've just recently found this group myself and it really is great. Hope you are feeling well.

Take care,
Pat

[Pat 110]

Originally Posted by ras1256

Hi ya'll (sound like Erin now!),

Pippi - really - don't try ANY exercising if the neuro nixed it for now. Remember, muscles have memory and bounce back quickly when you are able to exercise safely. What I do when it is nixed for me is just isometric - tighten then release the muscles just a couple of times each at different times and rotate - don't go through all the muscles in one sitting, ok? And stretching is just as important, so don't forget to stretch them out also. That'll keep them from turning to total mush without wearing you out.

Pat - Yoga was one suggested for me too, but I didn't get the chance to try it before I got really bad . I had some Pilates tapes that I tried, but they agravated my kneck even when I tried the modifications (I've had 3 neck surgeries, so it's REAL temperamental). Let me know how the Yoga tapes work - I'm good to go and really NEED to get back to something more than walking at this point.

Nancy and Xmas - love the stories! Sorry you're having so much trouble with that pool, Nancy, but your sense of humor about it is delightful! It must feel like the carrot dangled in the face though! What torture to be so close and yet so far.

Xmas, I have one of those hubby's too. My dad and brothers are also like that so l thought it was a gene thing for men until I met a gal whose husband couldn't even help her hang a little cafe curtain rod - he SUPER GLUED it!! What a goof!

Keep up the good humor everyone - laughter is the best medicine!

Hi Becky,

I am so happy you finally got the right diagnosis & treatment and are feeling so well! We are sure going to miss your posts every day. Take care and don't try to take on too much at once.

Hugs,
Pat

[erinhermes]

Hey sweetie! Wow! You have been a busy little bee! I am so happy and proud for you!

You just take it ez and don't overdo it! You sound as bad as me! LOL!

Those antivirals sound like gold! Wish I could get my hands on some! My cold sore still won't go away and it has been months!

Glad to hear you feel so great! That is wonderful!

Big hugs!
Erin

Originally Posted by ras1256

OK here's my update - I'm such an airhead sometimes.

I'm back to work - just in time for the Memorial day holiday. I knew I had my consult with the MDA doc on Tuesday the 26th, but in my confusion I thought of Tues as Monday (which of course I had off), so I was preparing for my appointment this morning! Noticed the date and thought -uh oh! I had even set up the back up tape at work with our Monday tape Tuesday, so you can see how messed up my internal calendar was.

I called to explain what happened and discovered I probably didn't want to see THAT particular doctor anyway! I was told that HE wouldn't see me since I missed my appointment so I'd have to be scheduled with someone else. Talk about egotistic!
Thing is, when I asked why they don't do reminder calls, I was told they do, normally, but since my appointment was the day after a holiday they didn't get me called on Friday - so they messed up due to the holiday just like I did - but he won't reschedule me for him????? ARGH! That's exactly the kind of doc I DON'T care to see anyway, and I think I'll tell them that!

Anyway - I'm doing so well I can't even believe it! Friday I spoke to my neuro's assistant about the antiviral success and to see if she thought I could postpone this MDA appointment and if she wanted to see me before hand anyway, as well as to let them know I was done with the Prednisone and when could we schedule my MRI.

She still wants me to see the MDA clinic to reconfirm the MG (again), and will see me after my MRI in 1 month. I'm not sure what the point of the MDA clinic is, really, but if she insists I will do it. I don't think she can argue much with the anti-viral success if I can ever get in to see her and discuss it, but I agree about the MRI - I do want one more done - just for peace of mind if nothing else. This TM should show on MRI too, but she said I don't need to come off the anti-viral before hand, so I don't know how that would show the inflammation if the meds are helping it. I may come off them for a little while before hand anyway, again for peace of mind! Not too long though, I don't like tanking!

We had our b-b-q for my girls going away. Had a total of sixteen people and I had a blast. I was actually able to get up at 5:30, make potatoe salad, clean some, take my shower, blow dry my hair, run around setting everything up, play hostess to everyone, clean up after, and not be completely wiped out! That's after making the 2 hour round trip drive to my mom's Saturday to take my daughters cats down there, and chatting up a storm while there!!

To think that just a couple of weeks ago I couldn't even get up long enough to make my own food! I love these anti virals as much as Erin loves her IVIG! I have worked almost a full 8 hrs both yesterday and today, and came home and worked in my hubby's office for a couple of hours too. I think I may need to back off just a little though, cuz I do feel a little weakness creaping in on me, so I can only get on here about once a week now.

I miss you all and being able to keep up with all the posts and new people! It's amazing how our group continues to grow! Welcome to everyone new. I hope to be able to get a schedule set that allows me a little more free time soon, but for now I need to get myself back to being able to "take care of business" (and earn my keep around here!).

Take care, everyone. I'll be back! No doubt with another LONG post. Thanks for putting up with me on these.

[TxSimon]

Originally Posted by Pat 110

Hi Simon,

Welcome to the group! I've just recently found this group myself and it really is great. Hope you are feeling well.

Take care,
Pat

Thanks Pat. I'm having a blessed day today and believing for another tomorrow. I pray that we ALL have one tomorrow also!

[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.