There is one more thing you have to take into account.

If you are seronegative and have normal EMG results, the most important factor for you (in choosing your treating physician) is that this person "believes" there is such a thing as seronegative MG with a normal SFEMG.

The vast majority of the neurologists/MG experts (including those considered "best of the best") still believe that it is impossible to have MG with a normal SFEMG. ( I am saying believe because they have no scientific data to support this notion. It is based on unproven assumptions and extrapolations).

you don't want to go all the way across the country only to be told that you don't need any treatment as there is nothing physically wrong with you.

Also, many neurologists will be glad to promise you that with their treatment (and each of them have his/her favorite approach) you will go into complete remission and lead a completely normal life. The question is what have they got to base it on.

I suggest that you read this:

http://jama.jamanetwork.com/article....icleid=1105123

Another thing to think about in a doctor is finding one that weighs risk of a treatment against benefit. I have been to doctors in the past for other conditions that would happily use high risk treatment that did very little good.

So many things to think about in finding a doctor. I live rather rural, outside a small town. When I saw the posts about how few MG patients there were especially compared to the number of neurologist, I figured I was probably the only MG'er between here and Philly. I now know there is at least 1 more. Probability is there is at least 100 MG patients in Philly. It is only an hour away, so I think I will have a better experience there. Someone also recommended that I go to a University teaching hospital and Jefferson is. Wish me luck. I am still waiting to here from his office if he will give me an appointment. At least he takes my insurance.
Thanks for all the suggestion,
kathie

I could only access the first page but intriguing thought about conferences. I attend at least one 3 day legal conference every year and for lawyers i would say we get what we put in. Those who go to socialize and climb the inner social ranks do not reap the same educational value as thse who put in the time and work required, as with most things.

Regarding doctor rankings I was Discussing with colleague today how the usa today ranking seemed very similar to ranking system for lawyers called super lawyers. Although i would not personally hire all of the lawyers on super lawyers i can say ffrom personal knowledge, connections are important to being included, but almost all i have ever known that were included are extrremely competent. Whether or not they give their all to all their clients is another story. because i know some that i do not think are so good (i must disclose i am not included in south florida super lawyers which i believe is only because historically i have been more concerned with doing great work than climbing inner circles although admittedly i have to say in past several years i recognized the value of doing so and reaped benefits, fair to say before getting ill i was on fast path to inclusion.

So i am going to say there is no best of the best, especially with MG. i am very happy with my doctors competency and patient relation (albeit he is vey very busy with patients and maintaing leadership position at school). I am going to continue to be aggressively proactive so long as he continues to be receptive to same i think i am waaayyy ahead of the doctors i dealth with from fort lauderdale or miami.

Also, many neurologists will be glad to promise you that with their treatment (and each of them have his/her favorite approach) you will go into complete remission and lead a completely normal life. The question is what have they got to base it on.[/QUOTE]

I would run from a doctor that made that promise! As lawyers we are explicitly prohibited from guaranteeing outcomes, im surprised no such rules apply to doctors.

Funny i am seronegative and have negative emg (most likely becsuse no one told me not to take mestinon) and only slightly abnormal sfemg (both done within hours of taking pills) but my doctor does not seem concerned with that and we are proceeding with what i think is standard first line teatment, mestinon which is helping but not enough, prednisone which hasnt started helping yet and if no help from prednisone after 3 more weeks than we will consider next steps which i think he is thinking plasmapherisis. So all in all it seems to me it would be unreaonable for me to go to someone else for another opinion.

My impression is my doctor w more concerned with excluding other illnesses via the emg, ncs and sfemg.

I have never had a doctor guarantee a cure or even really suggest that it might work. I highly suspect that I am the only MG patient that any of my doctors has treated.

I was taught that as a veterinarian, I was not allowed to guarantee cures. I was told it would get me sued. Then I would need a good lawyer.........

Emg
 

I am worried about the EMG. I have/had RSD in my left foot. I had lots of EMGs in the past and I can tell you they are extremely painful on a limp that has RSD. I am also not sure how the RSD will effect the EMG diagnosis for MG. I hope they will do it on a different limp. What limp do the perform the EMG? With RSD they did it on both legs so they could compare the differences. On my good leg it only felt like a humming sensation, on my bad leg it felt like I had stuck my leg into an electric power generator. I do not look forward to that test but I guess they cannot do a diagnosis without it.
kathie

For me wasnt too painful except when they trried to do that muscle in neck (i dont know what it is called but it is that weirdly sensitive muscle that your older brother would always grab, paralyze you by). Anyway that was too sensitive for me to be able to stay as still as i needed to so they just moved on to another muscle.

Good luck, hopeit isnt too painful

Just like you say, there can be excellent doctors who are too busy taking care of their patients.
And there can be less good ones with very good public relations,
And there can be those who are both.

I personally think you have made the right decision.