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...

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SeattleWriter 04/28/2014

Hi, guys! It's me and my thymectomy anxiety again. :) I've met with the surgeon, then talked to my neuro again, and everybody seems to be in agreement that I should get the thymectomyexcept family and friends! I keep hearing that I should get a second opinion before having the procedure done, but it seems pretty clear to me that a) I have autoimmune MG, despite my seronegative status, based on my great response to mestinon and prednisone, and b) thymectomy is a standard and good treatment for autoimmune MG. Am I being horribly negligent if I don't seek out a second opinion before scheduling surgery?

annkemp 04/28/2014

Well you have the opinion of your neuro, you have the opinion of your general doc and the opinion of your surgeon. Sounds to me like you got a second opinion. They are just scared....understandable. Just reassure them that it is part of the treatment plan for patients with MG. Reassure them that you have 3 opinions.

wbdolphin 04/28/2014

I can understand your family and friends being worried/concerned, but what they need to do is extensively research MG; from its treatments to its long term outlook. There is a possibility that a thymectomy could prevent you from having to take medications the rest of your life. And, some of the medications, as the disease progresses, can be toxic. In the past three days I have read of two others on another MG support group website that have developed extreme problems as a result of their MG medication, Cellcept.

mamaof7 04/28/2014

I have the opposite problem. My family wants me to have it, when I get stable, but my doctor isn't for it at this point.

Sally101 04/28/2014

I was diagnosed with MG when I was 76 years old. I had the thymectomy within three weeks, because I was told the sooner you have it done the better the results.

Six month later I met a woman who is 56 now and she was diagnosed with MG when she was 24. Her Dad was a doctor and she had the thymectomy right away. At that time they kept her in the hospital three weeks. (They kept me two night when I had the operation) The good news is she went into remission within a month.

I have NOT gone into remission and I still have a lot of symptoms, but I feel that I have done everything possible to help my sitution. Good luck to you no matter what you decide to do..

SeattleWriter 04/28/2014

thanks, everybody. This is kind of reaffirming what I've been thinking; I've got to do everything possible to improve; I owe it to myself and to my husband to live a more functional life, and if this surgery could give me that possibility, then I need to do it.

debbie1973 04/29/2014

Had my thymectomy at 19. Took a few years, but I had 25 years of drug free, symptom free remission. I would do it again in a heartbeat.

Cj416 04/29/2014

You are on the right track in my opinion and there is nothing wrong at all being pro active , asking lots of questions and seeking opinions.

I had lots of support from my inner circle and that proved to be quite valuable to me.

Keep us posted we are here for you...Cj

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