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!

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

Hey girl! THe reason for my many, many, many abcesses is that when I had my crowns put on, my dentist (a truly wicked man) shaved all my teeth down way too far, thereby killing all of them! I have had to date over 30 root canals and can now only see a specialist that charges $2000 per root canal. Before I had my crowns put on, I never even had a single cavity - my teeth were a little crooked (me and my stupid vanity) so Dr. Minor shaved down 16 teeth - the absolute worst choice of my entire life. Then the genius didn't even SEAL the teeth @ my gum line. I am still paying for it after all these years.............

I am still trying to have him pay for what he did to me. No one should have to go through what I've been through. His negligence really ruined my life...........

Of course, now no normal dentist will even see me - too risky in their opinion!

Joy!

Take care!
Erin

Hi Erin
hey toothache that can be so painful but not as bad as those bugs!!! and your busy week is over so less stress for you Glad alls well!!!!!!!!!!! oh that breath thing thats scary
take rest

YIKES! That sounds HORRIBLE. Teeth are such a part of who we ARE, and to have gone through what you have....makes me shudder.

I'm currently wearing braces on my teeth. Interesting with the eating problems I have due to the MG. Oh well, maybe only 6 more months or so to go and then my smile should be much improved.

Take care of "the self" (as my dd used to say)

Missy

Missy,

Hey there! How is your daughter doing with all of the new and strange sounds/noises/etc that are all part and parcel with renovations? I know my son cannot stand it when things are out of order or even when our home is messy, so was wondering how your dd was handling it?

It has been a long and noisy weekend here - bday parties and the like - AUGH! My stepson had all sorts of kids over last night and I awoke to a huge mess in my home! My OCD kicks in and I cannot handle it (think Monk on steroids)........

It was all taken care of and now I'm on the right pole - in fact, my hubby and I are going to watch the new Indiana Jones movie in a few minutes

Friday was sooooooo much fun! I had a blast singing (though I doubt anyone that heard me sing would agree). Today is all about staying in bed and relaxing - yay!

Let me know how you are when you get some time!
Erin