I havent been around here too much lately.
Im trying, like everyone else, to just move on with the disease.
Ive been getting my IVIG every 6 weeks, and up till the last 2 doses, it worked great. But now I find myself taking mestinon again, first time in almost a year. My eyes are worse, and fatigue is a big factor although the neuro doesnt think mg is the cause.(or the main cause)
Frustrating, this weakness most of the time now.

My neuro told me I wont progress, and I believe him.

Not having a good record with steroids, I opted not to go on cellcept, to stick it out with ivig and mestinon if needed.

I just cant seem to shake the fatigue. Im not used to not having energy.

I go for checkups and nothing in my blood is off, like pressure, sugar, etc.

Ive been having trouble with my dexterity in my fingers, and went through tests to find out I have carpal tunnel syndrome.

Will this spiraling downhill feeling ever stop? Will I ever feel energentic again?
This is the only thing on my mind lately. Its an unhealthy way and attitude to live by.

Allen, I'm sorry to hear that things are not as well as they had been for you. It is so difficult for normally active folks to have no energy. Isn't funny how many things we used to get done in a day - and we didn't even count them as something we got done. We used to only count the 'big' stuff. (Now, if I dust and vaccuum in the some day...I count it as 'I dusted' and 'I vacuumed'...instead of I cleaned up the house!!)

Hang in there. And do come here and vent often. It really does help each of us to let go of some of the stress - - especially since stress is so bad for MG.

Allen,
Sorry that you are having weakness again. I am on IVIG once every five weeks but I have always continued taking mestinon and cellcept in addition to my IVIG because my Neuro wants to keep me as stable as possible. I didn't realize that you were only on IVIG alone. Sometimes a combination of treatment works best.

Maybe you and your neuro can find the combination thats best for you.

I hope that is sooner rather than later.

Take Care,
Shari

Allan, I know EXACTLY where you are coming from. I ask myself what makes the difference all the time. I have been on monthly IVIG since Feb. 2010. I also take Imuran and Mestinon. I have been tested for carpel tunnel syndrome and it was negative. I try to explain to everyone what my hands feel like. It is like I have mittens on all the time. I can't really feel and grasp like I could before I got MG. I feel it has to be connected but my dr doesn't have any other thoughts.

I just have to enjoy the good days and just wait out the really bad periods. I hope that you have some better days coming, Allan. Take care ~ Melanie

Sadly we have to share our feelings to people with the same disease as its almost impossible to share these feelings of immobility, gloved hands, weakness, etc., with people that do not have MG and expect them to understand.
At times I feel as if I am a burden to my family, and while they are very loving and wonderful one feels at times like they just want to not hear about any more health issues.. Yet, this MG rules our lives so harshly its hard to make any plans like we once were able to.
Allen, I have no magic words of wisdom but I do suggest you count your blessings as there is always someone worse off and there has always been times of remission for me even if they are short ones. I only take Mestinon so far as I was only diagnosed a cpl months ago but have had symptoms for most of my life.
I, too, have been very very active and some days I can barely function so its been a hard thing to accept. However, I have watched many friends pass away and I am still here enjoying the beauty of life and I am not going to waste any day I can smile and feel the warm sun on my face.
My advice is to try to find peace and happiness each day at whatever level you are at - don't let MG take away your love of life ea day - find things you can do even when down for a spell. Might be as simple as come to this site or read a book - but we all can work up a good case of pitty party if we dwell on the things we can't do...
Hang in there!
Randy