Is the specialist refusing someting specific or just being uncooperative? Do they disagree on a treatment plan?

I guess it depends who you are most comfortable with and who is the most qualified if your case becomes complicated. You also have to take into consideration the hospital you would be treated at if you should go into crisis.

There are many here who travels great distances to be seen by neuromuscular specialialists who see many MG patients. Others get good care with their local neuros. You need to ask yourself what would happen if your symptoms worsened or went into crisis or develop other autoimmune disease.

Personally, I too have to give up a day to see my neuromuscular specialist in Dallas ...with many overnight trips. I would not be here today if I didn't have my specialist and neuro hospital.

With my long distance neuro, I am able to receive IVIG in my hometown but not plasmapheresis as my hospital does not give it. I can get blood work here and have it faxed to her. When I had milder symptoms and was stable, I only saw my specialist every 4 months.

-sherry

The specialist requires being "the only physician managing your myasthenia medications", adding "Otherwise it gets too confusing."

He then wrote "You have to f/u with me regularly at XXXX with only occasional emails re: your care. I realize distance to travel is an issue, but we can't take short cuts."

"Uncooperative"... perhaps.

I've just emailed a local support group to see if they know anyone local.

Forgot my manners. Thank you both.

I can see his point. I don't like the "only occasional emails". Sometimes it needs to be more often but I think I only occasionally correspond with mine.
Good luck!

Have you confided this to your local Neurologist? Maybe he can help you with his take on this. I know specialists are limited, but maybe this one is not the one for you and there is another one you can find?

The local group gave me several names, and I'll follow-up on those. I'll also review with my local neuro. The support group rep used the phrase "collaboration of care", which I thought was most appropriate.

I really don't want to give up a day of my wife's and my lives every time I need my meds adjusted (which as I've read here may happen more often than I'd like).

Thanks all!

In a world of electronics the specialists demands don not make sense to me.

With MG and its unpredictibility you need someone with whom you can communicate at the "drop of a hat." The " with only occassional emails" doesn't sound like someone who welcomes or maybe even tolerates interruptions in his day. Unwillingness to work with other medical personnel really makes me feel uneasy.

Like Sherry my neuromuscular specialist is far away (300 miles). He manages my MG care and I have no local neurologist. BUT he is always quick to reply to emails from almost immediately to 2 days depending on the urgency. He has worked me in on short notice. I have tried to stay ahead or on top of symptoms knowing how far away he is, because I would rather be there if it ever came to hospitalization. We are "on the same page," working together. I wish it for everyone here.

We need the specialized knowledge, but we also need communication and comfort with the doctor that supervises our care. Keep trying to get that in the same person! b.

I'm very concerned about the specialist not wanting to work with other doctors to coordinate your care. I understand that things can get confusing but in the interest of optimizing your care it seems like the specialist would welcome the assistance. Especially given the distance you have to drive to get to them. I have to wonder if he feels as though there is some sort of competition for ultimate power when it comes to your MG management. Perhaps they don't want others changing your treatment plan or something. Do you see your local neuro for things other than MG? If you are then I think it's reasonable to stay with your local neuro for your other issues and the specialist for your MG with the promise to only see the local neuro in the even of an emergency.

My next question is, how many MG patients has your local neuro treated in the past or presently. Because there are so few specialist I think others have had to live with whoever is able to treat their MG regardless of lacking that specialty training. It sounds like your local neuro has a good handle on your symptoms and your condition in general. So I'm wondering if he has treated MG patients before or if he's consulting with a colleague.

I think that you have to keep your options open no matter what you might choose to do. I do hope that you find a happy medium though.

Good luck to you. Sending you hugs and lots of support.
Aloha,
Angie

I travel for a specialist. I did find that my local neuro was easy to see, but I think she was over her head with my MG. I saw the specialist just in the nick of time, I think.

I should add, that keep an eye on your symptoms. They crept up on me. I started on Mestinon but needed other drugs later.

I was lucky in a way. Back at the time of initial diagnosis?
My case presented some atypical symptoms.
So my local Neuro referred me to a big city Neuro, who had considerable experience with MG.

But after the referral, my case was passed on to the big city Neuro.
I have no local Neurologist now.

My big city Neuro cooperates with my other local specialists.
In fact, my other local doctors are only too glad, to have the big city Neuro directing my treatment. Fearless Leader, sort of.

My local Neuro and my big city Neuro agreed.
The big city Neuro would handle my neurological treatment.
Even though the two Neuros are associated with the same hospital/medical school network.

I continue to travel to the big city Neuro, as the treatment I have received there is spot on.
In addition, the big city Neuro office is far better at communication, than any of my local doctors. Go figure.

My hometown metro area is about 350,000 people.
I now travel three hours by car, one way, to the big city Neuro, metro area of two million, plus.

Sorry to run on.
Ask yourself this, maybe you already have the answer?
Did your local Neuro refer you to the distant Neuro, because that is where the expertise is?
Or was the local Neuro just looking for confirmation of the diagnosis?

Best wishes, Ross

I'll look for another specialist (This one's at a world class teaching hospital) and hopefully go to him if things get out of control in the meantime. The hospital's surgeon to whom he referred me for the Thymectomy made us wait 1-3/4 hours beyond the scheduled time before seeing us.

Has anyone had a similar experience at the Hospital of the University of Pennsylvania in Philadelphia?

As an aside: You'd think some profit-oriented hospital administrator (and the hospital's lawyers - God forbid we'd forget them) would figure out a way for specialists to collaborate with local neuros, thus allowing the specialists to "see" more patients, thereby increasing fee revenue.

As always, thank you all for your help!

A comment on not wanting to give up a day to travel to the specialist "just" to have your meds adjusted... making adjustments to someone's MG meds is not a simple thing, particularly early on in treatment. If you are getting weaker and need more meds, it's important for the doctor to see you to test your strength and judge how much weaker you are to know what needs to be done next. Are you slightly weaker, so that just increasing Mestinon or prednisone would be sufficient, or are you significantly weaker so that you need some rescue therapy like IVIg or plasmapheresis to keep you from ending up in ICU on a vent?

As for the specialist's statement that you would need to see him in person regularly, with "occasional emails" ... again, there is a lot to be said for in-person evaluations, especially early on in treatment, and it can be difficult for your specialist to get all the necessary information about how you are doing from an email. How open is the specialist to phone calls with you to talk about how you are doing? That would be a bit better than email for the specialist, and would help you with travel.