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 had my first round of IVIG treatments 2 weeks ago (4 days 5 hours each day) unfortunately all that happened was a severe headache on the last day that led to nausea. No change in MG symptoms. I have been keeping a log as suggested and noticed that hot/warm showers bring on DV for rest of the day. However cool showers have no effect and I feel great. Going to see Neurologist on Tuesday to get prepared for Thymectomy. Has anyone had this procedure done? Any input would be appreciated
This forum has been online since 2009 or so, and you can find quite useful previous discussions on most any MG related topic including thymectomies. The search on this page is pretty limited, but if you do something called a google site search you can find a lot more.
you type exactly the line below into your google search or browser address line
thymectomy myasthenia site:https://www.dailystrength.org/
and it brings up this set of results
https://www.google.com/search?q=thymectomy+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org%2F&oq=thymectomy+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org%2F&aqs=chrome..69i57.1911j0j7&sourceid=chrome&ie=UTF-8
Good Luck
Russ
I was diagnosed two weeks after my first symptom and had a Full trans sternal thymectomy 7 weeks later. Luckily, blessedly, my symptoms went away a few weeks after my surgery and 6+ years later I’m still pretty much symptom free. (Occasional blurry vision and urges for afternoon naps.)
Yes, the surgery was rough, but for obvious reasons I’d do it again. The painkillers did their job, and honestly the worst part of the whole surgery and recovery wa not being able to sleep on my side for a couple of months(sternum pain). I would also only want the trans sternal method done , as I’d be too worried that the robotic/da Vinci method wouldn’t find everything, but thats the worry wart in me
Let me know if you have any other questions about the surgery.
Lisa