I got my DR notes from the other day and it says that I can't be treated there. So that is a step in the right direction.

just getting on this forum for the first time, but had to write to offer my support. I was lucky enough to be diagnosed by a local neurologist who recommended that I see Dr. Drachman at Johns Hopkins. I have been treated by Dr. Drachman since being diagnosed with MG with thymoma in Nov 05.

I too have young kids so understand your concerns, needs etc. I was operated on in March 06. Since I was having sleep apnea at that point (along with major weakness, speech problems, everything else), Dr. Drachman made sure I was in the ICU right after the operation. The ICU nurses at Hopkins are fantastic. I know I'm one of the lucky ones but am now basically symptom free post thymectomy and and beginning to reduce my Mestinon and Cellcept.


Dr. Drachman is great and very caring - and careful. He is definitely the best person to take care of you especially with all your other problems, and is the "father" of myasthenia research. It's a priviledge to be treated by him, and Hopkins itself is at the forefront of this and other research. You didn't mention where you live, and I know costs are a consideration. Dr. visits are high - especially for an initial consult - but insurance may cover you (I hope), and I think it would be worthwhile. Call 410-955-5406 and ask to set up an appt with Dr. Drachman (Mondays only).

Best of luck,
Lisa

Well a lot has happened since I posted. U of M is going to be doing the surgery on Dec 6th. I am starting Plasmapheresis this week.

Has anybody else had the transsternal Thymectomy??

Transsternal's the big split right?? Then that would be moi...
Had mine in 1981 at age 14.