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...
Is it unusual for a specialist (this one's a full day trip by the time I've met with him) refuse to cooperate with a local neurologist (mine's less than 20 minutes away) to manage MG treatment?
I'm faced with a decision to commit to the distant specialist and give up my local guy, who's already scheduled me in twice "at the drop of a hat" (he's just put me on time release w/ 30 mg as needed, and it's improved my symptoms). It almost seems like a no brainer, but what do I know?
I'm faced with a decision to commit to the distant specialist and give up my local guy, who's already scheduled me in twice "at the drop of a hat" (he's just put me on time release w/ 30 mg as needed, and it's improved my symptoms). It almost seems like a no brainer, but what do I know?
My hubby goes to see Goran Rakocevic at Jefferson University Hospital in Philadelphia. He does not have a local neuro (we live only 1 hr away, and his MG is fairly mild and responsive to Mestinon). But we do know that Dr. Rakocevic is very responsive, and will return calls either personally or through his assistant, making adjustments to meds without a visit. It might be worth inquiring if he would be willing, if you become a patient of his, to coordinate care with your local neuro. Good luck!
As always, thank you all for the help and support!
As for the Philadelphia specialist, I read a post here about choosing a specialist wherein the phrase "cross him off" was used. Apropos, n'est pas?
He is one important point...I can contact my neuro quickly if needed through email and phone (if needed). I stay in contact about once each month.
My wife and I did not have success with our local neurologists
I had a local....he made too many mistakes for me when in crisis.
I choose the specialist who is an hour and a half away.
It can be tough.
I was severely down...in bed. Too many opinions could have made me worse.
You need to pick a main doc.
Maybe your main doc needs to be the local doc. That may be what is best for you.
It is hard some times having the main doc far away. In an emergency it is hard knowing I will need to drive a hour and a half away to be treated comfortably.
You may want to stick local and see how it goes. If he is a good doc ...he will find consultation if he needs it.
I can really understand to specialist not wanting to work with someone locally. Your care would be too important to him to feel he needs to compromise in a crisis.
Good Luck to you!
Judith