Stanford Neurology has several doctors that specialize in MG. They are in Palo Alto area. I am going in next Monday for a new consult. Check back with me. They believe in thymectomy.

Hang on, scidude!
I'm in Maine, so I can't help you.
But there are plenty of MG'ers here.
Who will be able to help you.
- Ross
PS:
Contact: one of the California Chapters of the Myasthenia Gravis Foundation of America.
They will have some recommendations for you.

The main chapter - is in Los Angeles.
There may be another chapter - in San Diego?

Stanford Neurology - sounds pretty good!

My neuro has just changed to Stanford. Dr. Srikanth Muppidi
He is excellent... If you want I will see if I can get his info for you.
Annette

I love my MDA doctor.He is covered by Anthem.
I would check out an MDA clinic.

Carly

I saw Dr. Leslie Dorfman, a neurologist at Stanford Hospital last week and he is very well-versed in MG and it's symptoms. He conducted a specific evaluation to confirm the diagnosis, then explained his philosophy of treatment which is to basically go after MG aggressively and back off to control the symptoms as soon as improvement is seen.
He was very knowledgable and spoke with confidence about his approach and what I should expect.
I would recommend him highly if you get a chance to go to Stanford.
Good luck with your treatment!

There is also MG Foundation of California that can help.

Hi scidude! I have gone through with IVIG and a thymectomy at UC San Francisco. Not sure of your age, but at the time I was in pediatric care under Dr. Jonathan Strober. He is a wonderful, very knowledgable neurologist. It's worth a try to get a hold of him, if you can. Good luck to you!

Dr. Shieh at UCLA is a specialist. He told me he would not operate on anyone over 40 though. If you are younger, he might.

For the thymectomy you will need a thoracic surgeon. I had a malignant thymoma & thymectomy about 8 yrs ago. My disease was probably so progressed by then that I saw no improvement in MG symptoms. They seem to have gotten all of the cancer. I need to be scanned frequently to be sure it doesn't come back. Good luck to you! Barb.

SciDude,

MG is a very variable condition with spontaneous remission which makes ANY treatment hard to evaluate. When you know what you want and need, you are still one person who has never treated another with MG and you are very wisely looking for an expert that has treated 100s of people with MG. This person may not agree with your treatment recommendations. There may be good reasons like wrong age, wrong sex, wrong CT findings. but these are all statistics and you may want to hit MG with the whole kaboodle at once. This may or may not be a good idea.

It IS a good idea to find an experienced neuromuscular specialist who shares your goals and general approach to the problems. Then you can work together to find the treatment that has the potential to give you the best outcome both with MG and lack of medication and surgical side effects and you can proceed with confidence and trust. You can follow through with treatment recommendations, become knowledgeable about what is known and pay attention to symptoms in a way only you can do, and not let anything stand in your way of getting better.

Thymectomy might not be forever, but it should probably be considered in that light.

tough decisions, good luck, b.

Dr Raymond Schaerf of Burbank, practicing thoracic surgeon, out of Providence St. Josephs Hospital. In my patient interview told me that in medical school he did thymectomies by rote, one after another. My recovery was quick. The nuerologists affiliated with this hospital have a grasp of myasthenia gravis. I drive to Burbank from the westside of LA, through the hours long traffic. I wish you recovery on your journey with MG. Peace.

Thank you for all the replies here. I am very new to this (3 weeks), and I had the same question as scidude (thanks, scidude).
I am in north San Diego county and really want a specialist who's dealt with 100's of MG patients and is up-to-speed on the latest options.
I guess I'll have to post another thread to ask about everyone's experience with the meds. I'm on 20mg prednisone and 3 x 60mg Mestinon 60 AM, 60 noon, 60 eve. I've got questions like is it safe to take an extra mestinon if my symptoms get temporarily worse?
Thanks for all the info!