Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I don't know if it is the warm weather but the MG has been taking a toll lately. I got a port placed for more plasmapheresis. (7th round in 7 months and my veins are not holding up any longer)
I finally met with a CT surgeon about a thymectomy. I dont' have radiographic evidence of an abnormal thymus but at this point am willing to try anything. I have been told that the earlier in the course of disease this is done -the better. Surgeon is very familiar with MG and has done over 400 transcervical thymectomies - which makes me feel confident, but I don't think he has done this for many patients who are antibody negative (which I am). He wants me to have a second neuro opinion and do some additonal tests since according to him AchR Antibodies are the "gold standard" for the disease. I am tired and feel like I really don't want to jump through hoops for a second time. I know many of you have had to go through the diagnosis game for a long time....and so I should just suck it up. I am just a bit frustrated and thought I would vent.
I finally met with a CT surgeon about a thymectomy. I dont' have radiographic evidence of an abnormal thymus but at this point am willing to try anything. I have been told that the earlier in the course of disease this is done -the better. Surgeon is very familiar with MG and has done over 400 transcervical thymectomies - which makes me feel confident, but I don't think he has done this for many patients who are antibody negative (which I am). He wants me to have a second neuro opinion and do some additonal tests since according to him AchR Antibodies are the "gold standard" for the disease. I am tired and feel like I really don't want to jump through hoops for a second time. I know many of you have had to go through the diagnosis game for a long time....and so I should just suck it up. I am just a bit frustrated and thought I would vent.
It's a very individual choice though. If MG is causing enough of a problem in your life for you to consider a large surgery like that then it may be the right choice for you.
Kimber
Jay