Allen, you will only have to WAIT the FIRST time. Once you SEE how long your IVIG lasts, you will have YOUR schedule!! Move it back about one week -- (that's how long it took to completely kick in, right??) -- and tell your doc how far apart you need to space your infusions!!

difficult to post here after reading all the problems so many have.
I went away for a few days with my wife.
I was excited my eyes and body were feeling pretty good.
what did happen is that at night, after a strenous day, I was able to go out and not really have any headaches or disorientation, was able to walk fine and felt ok, but my eyes did get tired to the point I needed to take small doses of mestinon, but I was thrilled I didnt get the disorientation I usually get when Im out walking around later at night.
Not too bad overall. I think Ill contact my neuro before april to ask about getting a second dose.

Oh Allen... I am so happy for you!

And thanks for keeping up this thread with your progress. It is more appreciated that you could know.

Sue

Hi Allen

Its so great to hear some good news, I'm happy you were able to go out and enjoy yourself!!!!
Hope everything keeps going well for you
Kate

Hey Allen,

I'm so happy for you and hope you continue to do so well.

Hugs,
Pat

Ive spent a few nights and days out, no dizziness, no headaches.
Im able to work at my hobby into some early evenings.
Im able to drive with confidence again at night, lights not bothering my eyes, glare from sun no longer a problem
Im working my usual hours, and finding it a bit easier to make it through the day, my job is just nonsense and stress all day long, never bothered me till I came down with MG.
I used to leave work feeling like crap, go home and just want to lay down and do nothing, now I look foward to going home and have a desire again to do stuff.
if this is Ivig working, and if this is how my life will be, I can live with it just fine and now Im going to pray I dont go downhill or start exhibiting any other symptoms.(btw, my teeth dont click anymore or my mouth doesnt shut, weird, I know)

Im moving foward, and Im feeling 100% confident ivig treatment is the way to go for me.

as always, I wish nothing but strength and happiness for everyone here.

Great news allen! Wow, reading this I thought I was reading a page out of my diary. I hope to experience the recovery you write about!

Cheers!

funny how old symptoms start to creep up on you.
not too upset now, since I know they are still beatable.
I am scheduled for home infusion of ivig the 30th, gonna keep myself feeling great.

Hey Allen!

It's been almost 3 months since your hospital stay - pretty darn good.

Pls. let us know how the infusion therapy goes at home. How many days / treatments are you going to get?

Good luck!
Sue

I believe Im scheduled for next tuesday, noone has contacted me except a pharmacy that questioned my weight and a few other things.
I thought by now the home infusion person would have touched base, but I guess they wont till a few days before.
I think its 2 days, approx 5-6 hours per day.

the past few days, Ive never felt fatigue like I have. Kinda weird. I get up, ready to rock, then within an hour or two, I feel like going to bed, so Im not sure if this is MG related, or just coming down off the IVIG, or just old fat man syndrome.
I now try to dismiss anything is related to MG, so I dont harp on this disease.
I am going to check in with someone regarding arthritis, since I notice the stiffness in my hands is becoming a huge nuisance for me.
hope you guys are feeling strong today, and every day.