I haven't been viewing or posting lately. Now that I am taking Provigil I have a little bit more energy to stay awake a little longer at one time and have been doing a few more things. I have also been able to cut down on my Mestinon to every 4 hours sometimes, instead of every 3 hours. I still have to rest every few hours. Anyway, went on a 3 day trip with my husband and was able to enjoy myself between the resting. Am now thinking I might be able to go on another small trip, like a cruise. Has anyone gone on one? How was it and did you have to use the patch? I get seasick just looking at the ocean!

I feel somewhat guilty for feeling a little better here and there while reading this forum. There alot of you out there suffering and trying to get the proper diagnosis/medication. I can empathize with you because I have been there. I pray for you all. I wish I had better words of support. I think the Sarge used to have some wise sayings. Does anyone remember?

Cindy, so glad you are feeling better! I've not been on a cruise, but I do manage one vacation a year with my daughter and her family. We always camp out, and I am able to manage by resting when I need to and begging off activities if I feel too tired.
I had had an upsurge in energy myself for the last several weeks, since I discovered I'm gluten sensitive and went gluten free in my eating. I managed to get rid of some of the excessive fatigue I was experiencing, and am more or less back to my normal MG fatigue. Nice to be normally fatigued, believe it or not!
Hugs,

Lois, congratulations to you, too, on your upsurge in energy! I am going to have to check out the gluten free diet. I like your term of "normal MG fatigue" versus "excessive fatigue." You have such a way with words that I can so easily relate to. Yes, I think I have gotten rid of some of that "excessive fatigue." Sometimes I have called it "bone-chilling fatigue!" You take care lady and I will too.

So glad the provigil is working for you. I don't know what I'd do with out it. Next month they're going to put my on Ritalin for the Narcolepsy. So hopefully that'll give me more energy. I need more.
How much provigil do they have you on right now?
I'm prescribed 300mg a day.
love lizzie

Lizzie, I kind of chuckle when you ask me how much Provigil did they "put" me on? It was basically my idea to take it after being given some free samples from another doctor (which I actually tossed because I did not know that much about it and that doctor said it was "highy" addictive and I did not want to be addicted to anything), and more so after reading this forum and how it helped you and others. I got to the point I needed help staying awake more and didn't care about being addicted. So, I "asked" my Nuero for a prescription. She said she usually prescribed to her Narcoleptic patients, but said it was worth a try. I started at 1 a day and now after a month or 2 I continue with 1 in the morning and added 1/2 after my noonish nap. I still continue to take Mestinon and can take it now every 4 hours or more versus every 3 hours. Mestinon seemed to be losing its effectivenss. Now perhaps I will have to increase the Provigil, but I will wait and see. Did you start at a lower dose of Provigil in the beginning? And good luck with the Ritalin. Do you also have ADD? I know my son used to take Ritalin (Concerta) for ADD.

Best of luck lady!

Lois and Lizzie, did I do the thanks thingy correctly? Hey, that is fun!

Cindy, I kinda like the thanks button, too. It's helpful if I really want to acknowledge a post I appreciated, but just don't have to time, or maybe the energy to reply. A quick click, and my thanks is recorded.
Have you voted on the poll yet about the thanks button? If enough don't like it, we may lose it. There's some concern that it might get to be a status/pride type thing. Kinda like: "Nyah, nyah, nyah, I got more thanks than you did!" I can understand the concerns, but I hope the vote goes to keep it. The poll is on the feedback forum if you haven't voted yet.
Hugs,

Sorry, Cindy, I just looked at the thanks button poll, and saw you have posted there. I should have looked before I asked! LOL!
Hugs,

Lois, yes I voted to keep the thanks feature, too. It's kind of fun. I like new stuff.

Hi, no, I don't have add. Ritalin is prescribed for narcoleptics. In children it works to calm them, but in adults, it is a stimulant. Weird huh? Anyhow, it's suppose to help me wake up even more. I'm nervous about trying it, but I need too. I just hate being on so many meds daily.
I can't wait until my body is off of Prednisone, I don't ever want to be on it again...that is if my body can get off it. I guess it can take a long time to get completely off of it.
At least with Cellcept, I don't have to worry about my body shutting down, if I have to go off of it suddenly, ya know.
love lizzie I think group hug is my favorite...