Quote:
Originally Posted by crayolagal
Greetings all...
I was recently diagnosed (June 2013) with a positive antibody test and SFEMG. My first symptoms were a droopy eyelid and double-vision (May 2013). My current MG symptoms are ptosis, double-vision, face droop, some fatigue, and little swallowing issues. I'm taking daily Mestinon (60mg x 3) and Prednisone(10mg dose) and feeling fine for the most part.
I know that I am very fortunate to have been able to get diagnosed and tested this quickly. I've been seeing an Neurologist who has a specialty in MG and he fits me in to the MDA clinic for appointments. I just turned 41 and he recommends a Thymectomy (VATS method). My thymus is "normal" - no thymoma present in the CT but both he and the Thoracic Surgeon (who I saw today) recommend the procedure.
This is just moving so quickly and it is freaking me out  They want to get me prepped for surgery with plasmapheresis or IVIg shortly after my family vacation in August. |
My opinion is to have the surgery as soon as YOU are ready and stable enough. If you think you could go under the knife tomorrow, then schedule it. If you don't feel comfortable with it yet then wait, but don't put it off too long.
My myasthenia was diagnosed after my neurologist didn't tell my orthopedic surgeon he suspected myasthenia. As he only suspected I had it and didn't want to hold up my hip surgery, he told me to have the testing done afterward. Which was really stupid in hindsight since the surgeon sent me to him for clearance. I stopped breathing on the table as a result of his neglect.
After hearing I almost died, he told me that he knew what my problem was. Immediately after this, he wanted me to have the thymectomy using the open chest method.
I didn't like the pace things were moving at, either. Instead of seeing his surgeon, I made an appointment at University of Maryland and met with surgeon there who does them through the ribs if you don't have tumor. He told me he'd do the surgery, but not until his neurologist cleared me.
I met with the neurologist, who specializes in MG, and she said I wasn't strong enough. She ended up treating it medically for two years, even though she had planned on doing it within six months. She kept saying we're missing something and she wouldn't risk the surgery until she knew what the complications could be. It turned out to be the SPS.
Anyway, when they finally did the surgery, the surgeon told me that there was no tumor, but the gland was slightly enlarge and he used another word to describe its abnormal appearance, can't remember it, though.
One year on, I'm definitely feeling better, but think it will still take some more time to see the full benefit.
If you don't feel comfortable with the pace your doctor is going at, definitely get a second opinion. My doctor later told me that if I'd followed the first doctors instructions, it could have turned out bad as you need to be stabilized to a certain extent. She would have preferred to do it a year or so sooner, but I'm a complicated case.
If you're on the east coast and want to know the name of my doctor and surgeon, let me know. Another place you could try, if you're not on the east coast, would be Mayo. I had a consult for the SPS and they really helped.