Hey Redtail! I'm glad to hear you're going in for IV IG - I call that stuff "liquid gold" cuz' it has almost a "magical" effect on me - I looooooove that stuff! I have alreay begged my neuro tp give me that in the future versus plasmaphoresis - that was way too scary - I guess I'm just neurotic, but this disease has already taken so much of my control away that I cling to the little bit I have.....weird, huh? You are going to feel GREAT after your IV IG - I just know it! When are you going in? I'm going to do some serious praying for you.....for remission, all of it! I've forgotten, what meds are you on right now? My doc is trying to "wean" me off of steroids and put me on Cellcept - my hubby says he has noticed a difference recently..........I have been able to put in serveral hours a day of work recently, which is a BIG improvement! You know how that goes, though, up one day, down the next..........I am on antidepressants now - Paxil, and I hope they kick in soon! I keep hoping I'll wake up one morning and this will all be a bad dream, but then reality sets in again! I have terrible night sweats, do you? I have to change clothes over and over - it's so gross! My face has gone down quite a bit, though. No one recognized me before -it was weird! I am on over 20 pills a day right now - from Cellcept to Xanax (for anxiety)............but I do feel like remission is RIGHT around the corner - I know you feel knid of puny right now, but when you feel better, please let me know how you are - I miss talking to you!
Erin

Hi Erin,
thanks for your reply. I have to agree IVIG is liquid gold!! last time I had it I felt wonderful for about 6 weeks, pity I can't have it a bit more often, each time I have it I'm reminded of how expensive it is, even tho it all comes from donated blood from The Red Cross. Not sure when I'm going in, its hard stuff to get hold of!!
I'm on Prednisolone, cellcept,mestinon, an antidepressant(couldn't live without them!!) and several other medications to fix the problems these medications cause!!
I went through a period when I sweated so much my whole bed would be soaked. I changed my anti depressants, this helped alot. I still have the occasional night sweats, but not as bad as they once were.
Even after nearly six years I still think maybe one day, I will wake up and find its all been a bad dream, hmmm still waiting.
I'm trying to be good to myself at the moment, and not stress that I can't do much, its hard tho, still I know there is a light at the end of the tunnel, and things will get better.
I hope things arn't too bad for you today
take care
redtail

The data suggest that a positive outlook improves survival in cancer patients... so I just tell myself to be happy &%$#@! it! and when that doesn't work I log on to this forum...I guess misery loves company

Redtail...I don't know how you can live without AC...if the temperatrue is above 78 F I start to slow down and over 85 F I become useless.

Hey Eeyore, I did fail to mention just how long the tunnel is, and in which lifetime I'll see it!!!!
Today I rekon that the tunnel has had a major rockfall, and will be closed until further notice!!!!!!!!
I am now in a until that has airconditioning!!!!!!!!!!!!!!! YAY, and it makes a huge difference
redtail

How are you feeling today?
 

How are you doing today? I am at home resting. I've had a pretty good week, but am wiped today! I am trying to take it easy, but feel so lazy just sitting on my sofa........Saw my neuro and hema this week - my hema thinks I'm going into remission - YAY! MY neuro is very cautious, but he did reduce my meds once again and wants to reduce my Mestinon (I'm up to 5 a day right now)........We'll see how that goes. I just don't understand why more people haven't had a thymectomy - for me it was presented as my only option
for a "normal" life, but that little boy Dallas and I are the only ones that have had it done - and my thymus was "normal" when it was removed. If I DO go into remission, I know that having my thymus removed was key in my remission............I'm gonna rest for a bit - let me know how you are when you get a chance!
Erin

Lots of us have had thymectomies, myself included. We just don't mention it, as we realize after years of waiting, that the elusive remission just ain't happenin'. True remissions don't happen all that often and I think your hemo did you a disservice by saying you are going into remission. Based on what???? Antibody levels??? While I hope it's TRUE (wouldn't THAT be cool!?), it's very very early to be throwing the word around so casually and doing so raises false hopes as MG is so very often a 3 steps forward, 2 back kind of deal. Enjoy the good times, keep out hope for the future but don't put all your hopes and dreams into the thymectomy (or any other treatment) basket.

Missy--who knows of only ONE person who has ever had true, drug free remission.

Really? Wow! I did not know that! Don't I feel like a goofball!?! I know what you mean about the 3 steps forward, 2 steps back, that's why I don't want to get my hopes up too much............How long have you had MG? Are you still on tons of meds like me? I was hoping that at some point they would be reduced, but only time will tell. I know remission is a long shot, but I"ve got to keep the faith, cuz' w/out that I'd just give up, you know? Thanks for the info anf let me know how you are when you get a chance! Erin

I've had MG 10 years, had thymectomy in 2000. Still on tons of meds, still have TONS of symptoms. Nothing is really better. Lost my career in 2001, and my child has never known me as a strong mom. Missy

What did you do before you lost your career? How old is your child? Mine is 16 - going on 30. He is a handful, but keeps me laughing! What meds are you on? So, you still have all the symptoms - problems walking, double vision, swallowing, etc? Are you able to be on disability? Do you have a support group? Sorry for all my questions, but I'm still new to this whole MG thing.........I was diagnosed in march........

Hi Erin,
don't feel like a goofball, as Missy said, we don't all say everything about ourselves, or may have done in the past, and don't wish to repeat ourselves. Or like me be in a bad place and really not have any extra "spoons" to add a post.
I think I discovered why my MG is so bad at the moment, I've got some sort of tummy bug, who knows what it is, gastro, medication?!?!?!?!?!

I to have had a thymectomy, back in 2003, I was doing really well for a while.
The last few days have been awful, I've had to get my Mum to take me down the street, cos I dont even have enough energy to drive, let alone the little things in life. I've spent the last 3 days in bed!! most unusual for me, but man am I tired and muscle fatigued!!I havn't been this bad for quite a while.

I'm so sorry to complain on your thread, just think I need to vent a little.
Hope everyone else reading this is doing a bit better than I am.
redtail