Thursday, January 03, 2013
I want all of you to know that i highly appreciate your support. I could not ahve gotten where I am without most of ou who ahve stood by me through thick and not as thick LOL.
I ahd my 6 month follow up today wit my neurologist. In the past 6 months UI ahve been having monthly IVIG treatments in the hospital for 3 days straight about 4-5 hours per day and take a pill called mestinon.
My MG (Myasthenia Gravis) a disease I didn't even know or hear the words before has not progressed but my eyes are not opening like we want them to.
The plan is he is putting me on a drug called Celcept. it will take time to work in my system. no magic stuff. I will continue on the Mestinon and the IVIG and take the Celcept at a low dose and gradually build up. In July when I return back to see him I may be able to taper off the mestinon and have less IVIG instead of once a month once every 3 months. It's an experiment and to see how i tolerate side effects. I need to research this drug to see what to expect. I'm all for going off some drugs. I've been able to taper off some diabetes pills and ibuprofen. So I don't take anything for aches and pains wicg is excellent.
Have a terrific day!