Alice, I in no way meant that it isn't a worthy endeavor. It is simply not something I personally feel comfortable with at this time.

I know what you and others have been through - myself included - and it makes me beyond angry. You know that.

Everyone has to decide what is best for themselves.

There are neurologists in the states, who are also MDA directors, who are interested in this kind of thing. Dr. Kaminski comes to mind.

http://www.gwumc.edu/smhs/facultydir...employeeID=829

I hope anyone who can will contribute their story to this endeavor.

Annie

I take my hat off to anyone taking risks to make life better for themselves and others both on and off a forum. Just look at giving an opinion on a forum – no matter how smart you are there´s a risk for all involved - 2 or 3 smart opinions plus one´virtual patient´s symptom description can end up a bit of a gamble on so many different levels, but we so appreciate those who do put out there, especially under the circumstances we are all in.
I´m also in awe of another person who ´off the forum´ speaks up for MG´ers, and brought back these thoughts for the other members of the group from a recent MG conference:

http://www.dailystrength.org/c/Myast...nta-conference

Good Luck to all.....

Thanks Annie,

I had some discussions with Dr. Kaminsky in the past, but things may have changed in his approach since then. The bottom line of what he said then was-"I personally have not seen patients with normal EMG including single fiber and with generalized weakness. This assumes the studies were done appropriately, which appears to be the case for you".

I think that finding good and open-minded neurologists who are also in leadership positions to participate in this, is an excellent idea.

I just think that this can be done only after we have a reasonable number of cases to present to them. Otherwise it is going to be futile.

You can see this as a chicken and egg situation. The prevailing approach is that a normal SFEMG in a weak muscle virtually excludes MG. In order to change this you need enough patients in which the diagnosis of MG was done unequivocally despite a normal SFEMG.