Hi, saw the neuro specailist
 

Well, it went nothing like I expected. I truly expected him to scoff at the MG diagnosis, and want to rule other things out etc. I posted this on the other forum, but wasn't sure who still goes over there..;) so disregard if you've already read this.
After two and a half hours of unbelievably intense muscle tests, he confirmed the MG diagnosis. He wasn't happy at all that I've been on Prednisone as long as I have, so if my body tolerates the Cellcept, I'll be starting to wean of it. I'm so happy about that.
But I have to tell you, yesterday, it really made this all so real, more so than it has ever been for me. I was examined by one person after another. Including a rep. from the MDA. I have to start a Physcial therapy program for speech,balance, and strengthening certain muscle groups. (not sure how we'll do that) Also to show me how to do house hold chores in an easier way.
He said my blood work showed that Prednisone was doing a number and half on my metabolic system. And he would like to see me off of it as soon as we can. ( I was thinking ..um me too)
I didn't know that Prednisone could cause damage to ones nerves, and it has in my feet, along with the diabetes that it gave me.
I learned so much, and can't think straight. I'm very tired today. Muscles are sore, and tired.
Some of the things that he said were common in his mg patients were
memory problems
bowel and bladder problems
of course weakness
But I thought the memory and the bowel/bladder was nice to hear from a doctor who deals with us on a day to day bases.
He had me fill out forms for the MDA.
He said that he has seen real good results with Cellcept.
I'll be starting off at 500mg, and then we'll work up to 2000mg. Is this a lot, or the normal range?
I'll stop for now. I'm so tired today, can't think.
Love Lizzie
oh one more thing, the antibodies can change from one blood test to another. One time it can show up, and then another it might not. I thought that was interesting.

Wow, Lizzie, who did you go to? If he's not to far away from me here in W Tenn, I might try him should I ever get to the point of needing a neuro.
What kind of bowel and bladder problems did he say were common? I always had constipation until I suffered the bowel damage from the radiation treatments. I always used to be able to tell that I was underdosed if I was constipated. I'd up the dosage of Mestinon a little, and the constipation would go away. I knew about the memory problems, what we always call brain fog. For years I've told my kids I don't have a past, I live in the present. Once it's over, I've forgotten it!! :D
And I'm glad to hear the info about the antibodies changing from test to test. I've only ever had the one test, and it was negative, so I'd always assumed I was seroneg.
As you get the training in the therapy program, please share it with us. We can always use some helpful advice.
I'm just so pleased for you that things are going well! I know you'll be glad to be off the Pred. Keep us posted on how it goes with the Cellcept.
Hugs, hugs, hugs,

Lizzie,
I am so glad you got some answers and it sounds like you saw a good person who understands MG. I had IVIg Friday and still feel crummy so I'll write more later.
Gabe

I have the cellcept, and I'm starting out at 500mg, and then I have to slowly work up to 2000mg. But, I'm waiting until after Thanksgiving to try it, as I really don't want to take a chance of getting sick before. Plus tomorrow, I go in and have my final part of my root canal done, so, I needed to be well for that to get done. I have such sensitivity to so many meds, that I'm a little afraid, but desparate.
I saw the director of the MDA clinic, so he deals with this all the time. It was like talking with you guys, he really knew his stuff, and is up on everything. Extremely easy to talk to.

Gabe, praying for you. Do you always get sick when you have it, or is this the first time?
Love lizzie

Wow
 

Seems like it was your lucky day!!!!

Where these drs older and more knowledgable ??? Would really be nice if there was some sort of protical for testing for MG, just like testing for MS. We sure could use that, seems that most neuros only know touch your nose lol :eek:

So nice that you found someone to help you out. Let use know how a speech therapist helps you, I sure could use that, I almost don't like to talk to strangers anymore, I feel stupit when words come out wrong. :(

Take care, Patricia :)

Lizzie, I think we all want to share in your education. You have such a good way of communicating, too, so keep us updated on all of the good stuff you are going to be learning.
Hugs,