Hi everyone, i have never posted on a online community before but i thought i'd give it a try after reading some threads that offered encouragement and understanding based on personal experience of a relatively rare condition . I am still in the process of being diagnosed with MG even after a year of being on mestinon. I have the sero-negative type, we know that much. Now we (my new neurologist and I) are trying to figure out what flavor MG I have. (which receptor/muscle type is the most affected). I have widely generalized MG and have recently been hospitalized for a near myastenic crisis. I spent 5 days in IMCU with multiple stabilization's only to destabilize hours later. I was on a bi-pap machine and i got really lucky i wasn't intubated. I went home on Christmas Day only to find out that I was still so weak that my legs coundn't support me and crumbled underneath me when i would try and stand up. I have since learned that it was only my breathing that had been stablized; everything else was in shambles as far as strength goes. the hardest part was constantly being told i would go home when i would stabilize and then having the doctors retract that statement only a few hours and up to a day later.

I have a full time job and am self supporting. however, right now my job is evaluating wether or not i can come back from leave of absence b/c the weakness from MG has gotten so severe that it poses a liability risk if i am placed working by myself.

Now, my doctor is talking of putting me on Cellcept, and we have pretty much maxed out mestinon's effectiveness for me as this latest drug trial with mestinon is requiring pretty high doses to maintain a minimal level of functioning.

myasthenia can be a very frustrating disease with the way that you can be fine one hour and then so weak you can't hold your eyes open or head up the next minute.

Does any one out there know what it is like being on cellcept? Has anyone else had the exprience that i have with mestinon where the dosage must be significantly increased about every 3 to 6 months to mantain an aproximation of the previous level of functioning?

Ya'll have a great day,
Sincerely,
Bobcats (my college's mascot) rule