Oh! And since will power comes so easily to him...

He could also have:

Published one of these :Writting:

Starred on MTV :Head-Spin:

And gotten one of these :Clever:

All, just by thinking about it!

He has a lot of will power, but not that much imagination.

In fact he is a pretty boring, full of himself person.

The point I was trying to make was that without any scientific facts, no conclusions can be made. No one has studied ALL MGers, therefore, no one can conclude how we are all doing.

Studies won't help me finish my laundry.

All any of us can deal with is how we are doing at one moment in time. "What ifs" aren't helpful. And because MG is so unpredictable, someone can fluctuate from morning until night, day to day, month to month and teen to adult to senior.

Raven, I think many MG docs want to "fix" it. If they can't, they often blame the patient instead of coming to grips with how seriously stupid this disease is. The psychobabble they dump on women - sometimes men - has really got to stop. I know some men who can't even look at the blood from a small cut without getting squeamish.

Alice, I have known patients who have had MG antibodies and STILL get treated like they're nuts and are okay. So it's not only the seronegs who have a hard time. I have modulating antibodies and my history with neuros ticked me off so much I wrote a book about it.

Anacrusis, Honestly, I don't believe that controlling personalities can change. Most psychologists and psychiatrists don't either. If they admit they're wrong, they completely fall apart. And, unfortunately, a lot of doctors are left-brained, controlling personalities. See, I'm not in a goofy mood but you're illustrations were funny.

Unless they are about making a robot that can do it for you. ;)

But, I do get your point.

unfortunately very true.

It just makes it even more of a problem. Seems like the "box" is even smaller and tighter.

Raven

I hope you are having a good day today. There are many people here that understand what all that is like and that as well as figuring out how to deal with your symptoms you also have to figure out how to deal with other people as well which can be energy draining on reserves we sometimes don´t really have.

Good luck with that little extra work and if you ever need an extra supporter then I´m getting on that plane ASAP today!

Anacrusis :hug:

Thanks all again for posting :)
Today I had an awful day at a doctors appointment, it seems like my doc is just not getting what Im saying. Now I have to lower the prednisone dosage, without any substitutes... 1/4 down, just like that.
I do not believe it is a smart thing to do.... Im going to try 1/8 firs, see what happens. Im still weak but whatever. Atfter the appointment I was home, couldnt smile or talk normal for over 3 hours. And my eyes were droopy.
But, there is no harm is lowering the dosage, maybe even 1/2 down.
I don't get it, just don't get it.
Oh and I officially have diabetes caused by medicine now, so have to use insulinstuff. Grrrrreat.

Specially thanks to you anacrusis, made me smile (between my tears today).

Hey raven!!!!
 

:hug:SO SORRY TO HEAR YOU HAD A ROUGH DAY.........MY NEURO WANTS ME TO GO DOWN 1 MG PER MONTH (!) WHICH I FIND SLOW AS HECK, BUT SHE KNOWS MY MEDICAL HISTORY....

ALSO, TRULY SORRY TO HEAR ABOUT THE DIABETES. MG SUXX. NO OTHER WAY TO PUT IT.

MYNAME WAS ENTERED INTO THE CONVERSATION, SO I THOUGHT I'D RESPOND. NO IM NOT DOING BETTER. IM A "CHRONIC" CHRONIC - PER ALL OF MY DOCS - BEEN ALMOST 7 YEARS NOW. DO I HAVE HOPE? YEP! EVERY DAY! FAITH? PLENTY OF IT OR I WOULD HAVE GONE MAD! HAS MY LIFE CHANGED? YEPPERS!
I BLAME THE DRS FR NOT DX'ING ME YEARS AGO WHEN I HAD SYMPTOMS! I BEGGED FOR HELP. THEY TOLD ME I WAS "DEPRESSED"......SO WHEN I WAS FINALLY DX;ED MY FACE AND BREATHING WERE GONE AND HAD TO SPEND TIME IN THE ICU. HAD THYMECTOMY. TAKE STEROIDS. I GUESS I DIDN'T PITCH A BIG ENOUGH FIT. NO MORE. IF THEY DON'T LISTEN, THEY ARE GONE.

HOPE YOUR DAY GOES BETTER!
ERIN HERMES :hug:

I'm slowly, but steadily getting worse. I thought I was pretty stable for a couple of years. When I say stable -- I had exacerbations, but after they ended, I returned to the previous level of ability.

Now, I see a real decline. And I feel helpless. Like Annie said, we (she and I) do everything within our power to control this "beast". I CANNOT control the weather (triggers migraines which "whack" my MG) and I cannot stop the farmers in my area from spraying herbicides, pesticides, and fertilizers. I don't have the energy or where-with-all to move. :(

I know three people who have DIED from MG in recent years. People aren't supposed to die from this anymore, right????

Jana, I am sorry you are feeling worse. Has your doctor made any suggestions on changes in treatment? I know that coming to this site makes me feel emotionally better. The people here are the only ones I can talk to about this condition. I can not tell anyone at work. I know it would affect their opinion of me and how I am treated. Sad but true. I cannot tell my 14 year old daughter because I know it will frighten her and I do not even have a definite diagnosis yet. I am actually afraid of the official diagnosis because I do not know how to tell my daughter. I am a single parent.

I have 6 years before I could take an early retirement. I hope I can stay well enough to make that date so I can keep my health insurance. I wanted to retire to the shore. I will have to rethink that with how sick the summer weather makes me feel.

I live in a rural area too. Our house backs to woods. There is farmland only a half mile away. Do you think the farm chemicals worsen the MG, would a home air purifier help?
kathie

Thanks, Kathie. I tried IVIG and plasmapheresis and had HORRIBLE side effects. Doc agreed -- NO MORE!! Other current meds are not an option due to family history of cancer and my problem with steroid psychosis.

I cannot imagine having to keep MG a "secret". How stressful!!! Bless your heart!!

We know for sure that pesticides make MGers worse. They act on our muscle receptors. Personally, I have noticed that ALL chemicals make me feel worse. I'm now a fanatic about what comes into my house -- cleaners, personal care products, etc.

I religiously use air purifiers -- but, there is a limit to what they can do. :(

I want to move near the ocean, too. I cannot TELL you how much better I feel there.