[QUOTEI just don't think this is an easy disease to diagnose for LOTS of reasons. And if the test you're using has problems, because not everyone is the same, then how can they expect the results to be accurate? Again, they aren't asking enough questions and have "guidelines" that are simplified to make it easy for them. Well, it's not easy for us, the patients.

Doctors cling to certain standards because THEY need to be right, to know they've made the right decision. But diseases often don't stick to the same standards. They have a mind of their own. And we aren't all the same, thank goodness. And our disease "looks" different on each of us. Cookie cutter thinking is easier but it isn't exactly effective. Or nice.

Annie


I can't stop thinking about this issue!

Men and women aren't created equally. It takes longer for women to be diagnosed than men (7 to 1 difference!). It has to be more than sexism causing this.

.[/QUOTE]



Annie,

there are many biological differences among men and women, and this is being gradually recongnized over the last decade. and diseases do manifest differently, normal values of tests are different many times, and even tests such as a stress test are of different accuracy. but beyond that there are numerous problems with the SFEMG.

the bottom line is that it is not as accurate as those that use it would like to think.

all a normal SFEMG can tell you (assuming that it was done properly and there are no technical problems, or missinterpertation such as you have reffered to among others) is that there is a normal transimission of the signal from the nerve ending to the muscle fiber.

but what if the problem is after the receptor? what if this electrical signal is not properly translated into a muscle contraction?

it is like your computer is not working properly, and a technician comes, sees that it is plugged properly into the electical socket and says to you that there should be no reason for the computer not to work properly.

there are multipe steps from the activation of the acetyl-choline-receptor to the generation of muscle contraction. and all those steps should work properly, in order for muscle contraction to occur.

very schematically-calcium goes into the cell, it then leads to the release of calcium from intracellular reservoires (this is governed by other receptors, which are activated by calcium that enters the cell, but also caffeine and other pharmacological agents), this in turn leads eventually to the "sliding" of myosin and actin, which leads to shortening of the muscle fiber. each of those steps involves multiple proteins, many of which function is poorly understood at this point. MuSK, DOK-7, Rapsyn- to name a few.

I was quite surprised to find out that the assumption that any process that leads to fatiguable weakness should also involve the acetyl-choline receptor directly or indirectly, is not based on any evidence.

to me it seems that certain "axioms" have been created over the years, which are enforced by everyone agreeing to them. or as in the "hunting of the snark" by Lewis Caroll- what ever is said thrice can't be wrong.

and most patients don't "dig" and try to understand, they just accept what they are told. I probably would have done the same, if it wasn't becoming totally ridiculous, and if I didn't have an enormous amount of "thinking time" (thanks to one of the world leading experts, who gave me treatment that totally "knocked me down", and gave a few months in which I could not do much more then think, most of the time) .

alice