Hello all! I've been feeling really puny recently - maybe it's the move, or just general stress, but whatever the cause just can't seem to feel well, so 2morrow I'm gonna call my neuro - I just hope and pray he only wants me to have IV IG and NOT the other - I cannot handle the other - too darn scary and invasive for me! Yuck!

Maybe (hopefully) I just have a little bug or something......all I know is that this weekend I was MIA and haven't felt well ever since..........

My neuro is really great but he makes sure that when I feel yucky I am admitted to the hospital for another round of tests, etc and lots of meds, different treatments - (amen for insurance..........

Those of you that know me, please, please pray for me! I could certainly use it right now.........................

Take care!
Erin

Sorry you're feeling yucky poo but you sure had a good run of it. Most of us don't last so long between infusions.

I have to say, I have a BIG problem with your doctor admitting you for any little flare, and running tests, etc. You have MG--it waxes and wanes. He needs to learn to deal with it. All I have ever done is call and my doc orders up whatever I need. I've NEVER been hospitalized in 10 years merely for "MG stuff" and I've been VERY VERY sick more than a few times. You are at much greater risk of catching a bug (and I don't mean a LITTLE one) by being in the hospital.

Do call and let your doc know. You don't HAVE to agree to plasma...I've refused it a few times (never done it--it frightens me.) It's not been a problem. I'd also push for IVIG in the home or outpatient setting. Now that you're taking Cellcept (and what a tiny dose you're on!) you are more prone to catching the nasty bugs that lurk in the hospital setting.

Just for grins, if I were your neuro, I'd bump up the pred a tiny bit and increase the CC to 2000 daily. I'd also order you some IVIG at home. Will be interesting to see what your doc does. (Ahhhh, the ways we amuse ourselves--playing doctor!)

Keep us posted.

Missy

Hi Erin
you have been so busy the last few days maybe its not as bad as your fearing!!!!!!!!!!!! anyway just want to wish you a speedy recovery and a big
thoughts are with you Alan

Hope you can get some meds that help you!

Alan,

How are you feeling today? Things have been busy and hectic, but fun here! I wish I was in England right now - my MG loves the cold!

I just wanted to check in and see how you are feeling........When you get some time let me know how you are!

Take care!
Erin

Hi Erin
sunday morning went for my little walk to my village felt really good almost 4 miles their and back was so pleased that i managed it!!!!!!!! oh i hurt now but its so worth it.
weather is fresh. so busy bee your taking it slower now keep taken that medicine .............fun it helps
have a great week Alan

Alan,

I hope it cools off soon so I can start walking again! Texas has gotten cooler, but not cool enough for that! My face swells to double it's normal size on the heat! I have to keep my house @ 70 degrees or I am miserable! It used to drive my hubby crazy but now he's used to it - now if we could only get used to the ENORMOUS bills............

I am taking it easy this weekend! I am loving it! I have spent the whole day in bed watching movies and reading. The old me simply could not have done it, but I am getting used to it.........

Take care and have a GREAT week! try and soak in some epsom salts to get rid of your aches and pains........

Erin

Hi Erin
guess you don't get any snow were you live?
been feeling poorly the last few days but with lots of rest should be okay i've got my daughter Jenni comming home in 3 weeks she's 25 and living in Australia and i have'nt seen her in two years she's only home for two weeks and that will fly by but its going to be magic that was nice you having a day off and just chilling just need the weather to cool off oh its our cold and blustry time here.i see you have a lot of history were you livthe alomo.
have fun Alane

Craziest thing! Woke up Tuesday feeling like my old self! It was WONDERFUL!


I think the fact that I had 3 horrible tooth infections coupled with a sinus infection is what made me feel so awful! That or the move - changed offices!

I finally got some anitbiotics, so hopefully I will feel even better once my infections have cleared up..........

I was able to work and watch my precious niece today! She is 6 and so much fun! It was a really productive and fun day, but I am WIPED now!

My brother in law and stepson both have birthday parties planned this weekend - fun! 2morrow is karaoke night (For Aaron who is turning 30) and Saturday for Scott (who is turning 16) - both milestone birthdays!

Granted, I may wake up 2morrow and be too tired to get off the sofa, but it has really been better the last couple of days........

Jennifer - thanks for the kind words! You always cheer me up!

Alan - Thank you! You were completely right! I went to my dad's thing @ the social security office and it went great! They are only going to take $10 versus the original $400+.......I think I just overdid it! I really need to listen to my body more and stop trying to handle everything! My family can take care of themselves.........

Missy - were you a Dr? You are so darned smart! You really know what you are talking about! It always amazes me..........
My neuro does have me in the hospital quite a bit, but I think he's just worried that I'll get really sick again (whe I first saw him, even my face was "frozen" and my eyes were rolling around in my head - just awful!) He has given me his word that he will never allow me to get that sick again. He really is a great guy! He's the one that I was teeling you about that was holding my hand when I "came to" in post op...........
I hope to NEVER go back to the hospital. That is what killed my Grandmother - she caught pnuemonia after her heart transplant (well, 7 years after it)......

Thank you all!
Erin

No Erin, I am not a doctor....perish the thought. I am, however, a health care professional, with years of hospital experience, and a long time "medical nerd" (watched "Marcus Welby, MD faithfully starting in first grade!) After literally thousands of hours researching various medical issues and having MG for 10 years, I've got a pretty good "feel" for the beast.

Glad you're better. You really need to tend to your oral health. Bad oral health affects the entire body, and can contribute to heart attacks and strokes! (It also can make your breath smell like POO! )

Take care!

Missy