I have found that if one approaches doctors with firmness and a plan they often are willing to try something--especially if current treatments are not working.

I worked most of my career in a major medical institution working with doctors in research. Doctors are people too--and they respond to each person as they think the person expects them to.

Doctors see many types of patients from those who want complete guidance and direction to those, like me, who want the broad outlines, guidelines, warnings, and goals of treatment and prefer "as needed" prescriptions and take on much of the responsibility and assessment my ongoing progress.

So, if you want MG treatment and the doctor doesn't want to do it, you need to have him/her explain why, and if you disagree, say so, and ask for a trial of MG treatment. The biggest difficulty is treatment with the immune suppressing agents, as they are slow to act, require a long term commitment, and have difficult side effects that have to be monitored and, if not helpful, can be difficult to withdraw.

Not so many years ago, MG treatment was actually easier to get as the diagnosis was by symptoms rather than blood or emg tests. With the advent of the tests, doctors are looking for an absolute yes/no and with MG that is not always forthcoming.

I believe Jen sent you a message with a name yesterday. I hope you got it. She does have positive tests, but a good neuromuscular doctor knows that testing does not always show what is expected. And as mentioned before, negative EMGs while in Mestinon are absolutely invalid. b.

Shands in Gainesville, Florida will treat Seronegative patients, as I have been.

I see Dr. Gooch as USF in Tampa. I hear that Dr. Weiss is also really good. Both specialize in MG.

I have been under the care of neuroglist at Mayo - Jacksonville. I think she does an excellent job but I am also seropositive and EMG positive. I had a MG crisis last may. I was very please with my care at Mayo.

I can not speak to the issue of how well Mayo doctor's do with treating seronegative & EMG negative clients.

Bruce

You can see some of the MG neurologists at Mayo Jacksonville starting on page 5 at this link http://www.mayoclinic.org/mcitems/mc5500-mc5599/mc5520-1011.pdf

The newsletters from the Neurology Dept are located at
http://www.mayoclinic.org/neurosciences-update/ I think the only one on MG is listed above

Hi all. I've been seeing Dr. Weiss in Tampa thru MDA. He does know what he is doing. The unfortunate part is that I have several issues on the side that effect treatment for the MG.