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...
They will have that perspective - that you need.
Very nice to hear - that postings here, have helped you.
Make sure your surgeons, work with your neurologist.
re: anesthetics and antibiotics. Some of these - are to be avoided, when dealing with MG.
Good luck - with the thymectomy. Many people here - have done well with the surgery, the recovery, and the beneficial results.
I've not had a thymectomy, so will let others help you with that.
- Ross
Claire
Another Canadian here, and recently diagnosed as well. I am AChR negative and Ontario govt didn't approve MuSK or LEMS antibody testing. Maybe it was because I had a good response to mestinon so I am only on that for now. I had a clear chest CT during symptomatic period two years ago so am in a holding pattern as far as testing goes.
I've changed to a less stressful occupation (now desk job, previously stressful, physically demanding lab research job) so hopefully can continue to work a few more years before taking an early retirement. I was within months of having to quit before the tentative diagnosis as I was having trouble talking on the phone or walking to meetings in nearby buildings. I am a lot better on 60mg mestinon, three times a day but am fully expecting the disease to progress in the future.
Good luck with your thymectomy on Tuesday and take a whiteboard and marker, or paper and pen to hospital to communicate, if necessary. I thought that was a most helpful tip posted recently.
Flutebell
Michele
I'm from Canada as well, just outside of Toronto from Aurora. If you want to know more feel free to message me. Are you seeing a doctor at Toronto Western? General? Who is your doctor?
Sorry to hear you are dealing with MG though.
I live now in FL but from the Ottawa Valley.
Best wishes with your upcoming surgery. Ask all the questions you need to help you through this time.
Please take care, Larissa
Good luck with your thymectomy and hope you have such a positive experience that I had and still having . Make certain your pain management is a good one as some don't work so well with mg and have side effects within them.
Keep in touch and best of luck to you, your going to do great !..Cj
I would specifically like to chat with anyone who is seronegative and MuSK negative and has had a thymectomy.
Also, very interested in a discussion with anyone who has had no choice but to be on LTD because of their disease.
Thanks much, Rick
I am sero positive and no thymectomy, so can't help you with that. I do hope that someone can help and you get the answers you need. Good luck with your surgery and please keep us in the loop.
Claire