Hey guys! Just wanted to let you all know that the long week is FINALLY over! YAY

Had my lung function tests yesterday - and my results - well my lung capacity results were well within normal range.......but I did do better after the inhaler.........don't know what that means

I was also able to keep my PICC line in - I just have to go in once a week and have the nurses take care of it............they have been so sweet to me!

Hopefully I will find out my other results soon - I see my pulm on Monday the 9th and my neuro on the 16th. My blood pressure had shot up recently (140-150/90 - not the norm, and I hope it's not the roids........

How are all of you? I've missed you!
Erin

Yeah, Erin!

So glad to hear from you. I've missed your posts! Glad you don't have to get the PICC out, and glad to hear about the LF capacity. Good Luck on the 9th and the 16th!

Becky

I'm so glad it the test went well.

So how many times do you get to leave the PICC line before they have to move it? I'm glad you at least don't have to do it every month.

So I'm guessing you will know more about the tests Monday, I hope they have some answers for you.

Wow that is a HIGH BP for you. I also hope it's not the steroids, but if it is, there are things you should be able to do to try and help. Like low sodium diet. I hope they get that figured out too.

I have missed you to. So do you have all that energy you were hoping for? Try not to get too hyper and over do it. I'm sure that is a wonderful feeling.

Well enjoy the rest of your weekend.

Kristie

Hey there! How are you today? Are you feeling better? I for one am soooo happy to not have to go back to the hosp til Thurs or Fri!

I am a bit nervous about tomorrow - no idea what the pulm is gonna tell me, but he's young (37) and very aggressive! My old pulm told me that everything was fine and I'd prolly neer have to see him again - I am so glad I have a new doc!

As for Dr. I, I cannot wait to see him ! I always feel safer once he tells me everything is going to be OK, b/c he is great, but not all sunshines and rainbows.....lol!

Can't wait to hear from you!
Erin

Hey girl! How are you today? Are you feeling better?

I think that PICC lines can stay in place for one year before they hae to move them - here's hoping!As long as it stays dry and infection free, I am good to go!

I am really nervous about Monday. My pulm is good though and will take good care of me.

I have got to cut all (well most) of the sodium from my diet. I thought I was doing well, but with bp that high, something isn't right! When I see Dr. I on the 16th I believe he'll reduce my roids! fingers crossed.........

Another lovely side effect of the roids is that I am so shaky and nervous all the time that I have to take xanax and antidepressants.....hate all those pills!

I have slept most of the weekend - that time of the month - I know TMI - and it just wipes me out! Every time I have IV IG or the other, I start the day after it is over! It is pretty funny!

Anything new with you? How are you? THe kids? Your hubby? How is your breathing? Your energy?

Can't wait to hear from you!
Erin

Yeah that time of the month wipes me out too.

That would be nice if you don't have to have it replaced for a year.

It's wonderful that you have such great doctors. I'm sure you're nervous about tomorrow though. I will pray for good results for you.

As far as sodium goes, my hubby is on a low sodium diet, supposed to be as low as yours should be, and I am on a high sodium diet. Isn't that weird.

I hope they can lower your steroid dose, those things are nasty to the body. Although you do what you have to to keep going. I know my Mom has been on steroids for ten years now because of her Addison's disease. But she is on a much lower dose than you are.

Ah, sleep, what is that again? Oh how I miss that wonderful sleep. No I sleep a lot more now that both my kids are old enough to sleep through the night. But that has been a year and a half already.

It just never feels like I get enough sleep.

I got to go on a date with Hubby last night! We tried a new local restaurant and it was awesome! Now we wont have to drive 15 to 30 minutes just to go out for dinner.

The kids are good. David seems to be in a mood today, wouldn't even calm down enough to eat lunch, I had to put him straight to bed.

My poor Hubby, nothings changed there, he's still working his life away to pay the bills, mostly my medical bills at that. But he's so sweet he says that even with knowing everything that has gone on with my health he would still go back and marry me again. Awh what a guy, I'm so lucky.

I have a little more energy. My breathing seems to be about 50% better. That figures, it gets better when they finally decide to send me for a pulmonary function test.

My house is still trashed but hubby is trying to help this weekend. At least we got Emily's room clean and the dishes are caught up.

Hey I have a question. Do you ever feel, hmm, not shaky but that kind of trembling feeling you get when you push your muscles too hard? But not in one specific muscle, just all over inside, nothing really visible to anyone else.

Okay I couldn't explain that very well, but hey I know, I'm just weird.

Anyway, I hope you get some energy back soon, and that that time of the month is over quickly and as painless as possible.

Good luck tomorrow, and please let me know how it goes.

Kristie

Hey Kristie!

I get that weird shaky - jello-y feeling all the time - when I am driving, hangnig pics, etc.....it's really weird! I'm gonna ask my neuro about it on the 16th!

Roids are really hard on the body - really, really hard. My onc told me he has never seen anyone respong so well after being on such a high dose for such a long period of time, but the long term effects really scare me!

Your family sounds so amazing! It is great to be so loved! So few people really have that..........I am so happy for you!

Don't worry about the housework for now....once you are all fixed up, it will get done in a jiff!

Take care and try and get some rest! Oh, and please pray that tomorrow goes well!

Erin

Hey Erin,
I'm getting pysched about this new neuro I just found that actually lists MG as one of her "areas of special interest" or specialties or something. It's just unusual to find one of those. I see her on Thursday. Please GOD, don't let her start the questioning of my dx, too! I doubt she will, because my syptoms are rapidly progressing to a more "typical" MG - minus the eye droop (of course), but unfortunately I pushed a muscle group without thinking Sat. night that has really screwed me up. Feeling better this a.m. though. Good thing because I have some GOT TO DO's at work - ie payroll!

You be sure to keep us posted tonight, ok?

Talk to you later - congrats on being released from what I refer to as the "torture chamber" (hospital).

hi Erin
well its all worked out really well and just the results to wait for
don't you go and over do it because your feeling strong !!!!!!!!!!!
i'm doing quite well on the pred's tho it will be interesting how i cope when i get to my new max so you worry about having a larger face i've just noticed
that my chest has changed a bit just hope i'm not geting man breasts
those legs of mine are going to have to do lots of walking......
have a good week alan

Erin, I'm glad you are getting some answers.

Since you are on Pred, I'm wondering if that "shaky" feeling is diabetes. I don't want to add to your concerns but that can happen while on Pred. If it is Pred-induced diabetes, one of your doctors needs to check for it and take care of it right away. At least ask your internist to check your blood glucose, okay? Please don't wait until the 16th when you see your neuro. Yes, it might be muscle weakness but it might not be.

If the inhaler worked during your breathing tests, it may mean that you might have some lung inflammation (i.e., asthma). Did they use Albuterol? That's what they usually use.

Do you know if they checked your MIP and MEP? Those are the breathing tests that specifically show muscle weakness of your chest wall muscles. My pulmonologist always does those tests. That's what usually tanks when MG is getting worse.

I hope they can do something to bring your blood pressure down. In the long term, it can adversely affect the kidneys (my Dad had kidney failure from high blood pressure).

Sounds like you have good doctors. I hope you can get some rest and do something other than doctoring!

Annie