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...
Hi all -
As I mentioned in a recent reply, I'm fairly new here - I've been watching from the sidelines and just started jumping into some posts today - I love the camaraderie and help you all are sharing!
I'm 29, soon to be 30 and have lived with MG for 11 years now. Until this past year, I was only on varying amounts of Mestinon (I've "plateau-ed" at 240 mg 3x/day) - that seems to allow me to go to work and live fairly "normally", though my definition of "normal" includes a lot of fatigue it seems. :-P I just started IVIG this past summer and have seen a response from that, though I can tell when I'm getting close to my 4-week mark and need more. If I eat clean and healthy (for me, that means no sugar, bread or dairy) and exercise regularly (paradoxically, my body needs to be pushed to exercise in order to feel better), I feel pretty good.
HOWEVER, my neuro is pushing for a thymectomy... well, HAS been pushing for a thymectomy for some time now, stating that the younger I am, the more likely I am to respond positively to it.
I guess I'm a bit afraid of rocking the boat - I'm doing okay now... not the best, but not the worst either... the thymectomy seems like it would take a lot out of me - possibly pushing me to go on steroids (which I've avoided all these years), and I might not see results for years.
But then, on the other hand, I don't want to someday look back and regret that I hadn't at least tried every option, and think that I could have been living all those years (hopefully) in remission.
Your thoughts on thymectomies?
As I mentioned in a recent reply, I'm fairly new here - I've been watching from the sidelines and just started jumping into some posts today - I love the camaraderie and help you all are sharing!
I'm 29, soon to be 30 and have lived with MG for 11 years now. Until this past year, I was only on varying amounts of Mestinon (I've "plateau-ed" at 240 mg 3x/day) - that seems to allow me to go to work and live fairly "normally", though my definition of "normal" includes a lot of fatigue it seems. :-P I just started IVIG this past summer and have seen a response from that, though I can tell when I'm getting close to my 4-week mark and need more. If I eat clean and healthy (for me, that means no sugar, bread or dairy) and exercise regularly (paradoxically, my body needs to be pushed to exercise in order to feel better), I feel pretty good.
HOWEVER, my neuro is pushing for a thymectomy... well, HAS been pushing for a thymectomy for some time now, stating that the younger I am, the more likely I am to respond positively to it.
I guess I'm a bit afraid of rocking the boat - I'm doing okay now... not the best, but not the worst either... the thymectomy seems like it would take a lot out of me - possibly pushing me to go on steroids (which I've avoided all these years), and I might not see results for years.
But then, on the other hand, I don't want to someday look back and regret that I hadn't at least tried every option, and think that I could have been living all those years (hopefully) in remission.
Your thoughts on thymectomies?
If this is how you feel, it really shouldn't matter what others feel about thymectomy except for potential dangers etc of it.
Having said that, there is risk attached to everything.
My neuro has mentioned the possibility of a thymectomy.
For myself at this moment in time I dont want a thymectomy. For me I figure I can live with my symptoms at their worst where as a thymectomy has no guarantee to change things. In saying that if my MG was to generalize to other areas of my body, I think then I would probably opt to give the thymectomy a shot.
My advice would be to weigh up the pros and cons in your own mind and make the decision for yourself, certainly take on board what your neuro is saying but remember that its a decision that you will live with.
And it's not like you're using your thymus for anything!
So that's my advice--get the little robot to do the surgery, if you do it. If your hospital doesn't have robot capability they may not offer that as an option for you... you'll have to yell a bit...
~joe
Prednisone fourteen years later. I tried to hold off as long as I could because of the side effects.After the surgery I was just in pain. My strength return and I was able to do more for myself.The Robot is better now. You have to make that decision. God bless you. Cabbage7
Hope you feel better soon, either way.
Larissa
So glad I did.
The thing you have to consider is.....if you get worse....the impact of the surgery will be hard on you....and you will always wonder...If I would have had the thymectomy would I have gotten better instead of worse. You want to do surgery when you are doing well, not wait till you get worse. And also.....you wan to have surgery when you are not on steroids. Steriods effect healing.....so I would encourage you to get the surgery over with.
I attribute much of my "betterness" to the thymectomy.
We have to do all possible.