Since I was diagnosed only 16 days ago I have been reading all I can to get info. Still, the fact is that my mestinon isn't working and I don't go back to the doc until Aug. 14. I called but he wants to see me before he changes anything. Is there any med out there that will make me feel normal again or is this just the way I'm gonna feel forever??? I've read that it can get worse for the first 2 to 3 years!!! Is that only if your not being treated or for everyone???Sorry for all the questions. I'm thankful that I found this site. It's nice to get answers from people that really understand and are going through what I am

Hi Alissa,

all this must seem very new and confusing, I remeber back to 2002 when I was diagnosed, it was a very stressing time.
It is a long time to see your Dr, is he a specialist ie neurologist? He may suggest other drugs, depending on how you are going.
I read in one of your other posts that the mestinon isn't agreeing with you, not surprising, it doesn't agree with me either. Do you take it with food, this somewhat reduces some of the side effects.
One thing you have to remember is that MG affects everyone very differently, keeping this in mind,I am so much better that I was nearly 8 years ago, but not back to normal, but am thankful for how I've progressed.
Don't apologise for questions, its a great way to find things out, especially here!!
you take care and ask as many questions as you need, no matter how small they seem
take care
redtail

Hang in there! I was diagnosed March 6, but didn't start on steroids until March 15, and that was AFTER my 3rd crisis (coulnd't breathe), so as long you can walk, talk, breathe, eat, etc. they'll start you out slowly......Hopefully they'll put you on steroids soon, and that will DEFINATELY make you feel much better! The change will be amazing! I know this is a scary time,but you've found the right place; everyone here is so amazing and supportive!I know you are frustrated and scared, but know that there are a lot of people that are behind you and that THIS DISEASE CAN BE CONTROLLED! It will take a while, but the doctors will get you well again and that this is only temporary! Keep the faith!

Just sending out my hugs and prayers to you. My mom was just dx'd so I am new to this too.

Alissa,

I am glad you found this site. I understand how you feel-but try to educate yourself & be your own advocate. It is also important to be direct w/ your neuro. Keep the faith. I know it is hard. I was diagnosed in March of 2007 and at this point Mestinon is not controlling my symptoms enough. I cannot take steroids-long term and I had an awful reaction to IVIG. But remember MG affects everyone differently so keep that in mind. You are in my thoughts & prayers. Let us know how you are doing. This is a place of support and information(from people who really get it). Take care of yourself. Peace.

Nancy Lee

I feel your frustration. I was just diagnosed 4 days ago. I just found this site today. Half of my battle was getting the right diagnosis. Now I can work on getting better. After going through denial, anger, frustration and denial in the last four days, the next step is to start fighting it.
The internet is full of helpful websites so you can arm yourself with information. Hang in there.

HEy girl! My heart goes out to you - this is a really scary time. I was only diagnosed 4 months ago and have been in the hospital 3 times (for a total of 30 days since my diagnosis) HOWEVER I was stage 4 by the time I was diagnosed so that makes sense......What problems are you experiencing right now? Is it breathing and swallowing? Redtail is right. That DOES seem like a long time to wait for another appt. Do you have another nuero you can see or are you already "in" with this doc? I'm surprised your mestinon isnt doing anything but upsetting your stomach - I didn't have that problem, but the steroids TEAR ME UP! I really didn't feel better until I had a dose of IV IG and then started steroids. THey made me hungry and moody, but I could swallow and for that I will be forever grateful! You won't always feel this bad......it will get better!