I wanted to add one more thing. The SFEMG "results" are compared against the "mean consecutive difference" or MCD of "average" MCD for different age groups and muscles. For example, let's say the average MCD for age 40 of the frontalis (forehead) muscle is 35. What if YOUR average is lower or higher than that? Higher wouldn't be a problem but if your "normal" is 20, for example, then they will be seeing an increased jitter for you as okay.

No, I'm not saying I know more than doctors!!! Or the SFEMG experts. I'm simply looking at how they analyze the SFEMG by "averages" for specific ages and asking the question. What if you are normally "below average?" This is a simple statistics question, and one of educational standards, that questions what "normal" really means.

There is a pediatric neurologist in England who has seen firsthand that the SFEMG's of many children with MG needed to have the "average" MCD lowered. They obviously had MG but were showing normal on SFEMG.

I compare it to B12 results. My Mom was in the "normal" range of B12, or what the lab calls normal. But she was on the lower end and had parasthesias in her hands and feet. After taking methylcobalamin for a few months, they went away.

I 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

http://emedicine.medscape.com/article/1141438-overview


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.

I know that men and women lose weight differently. Women also store estrogen in their fat cells. There's skin on top, then fat, then muscle. I found the article below on the "fatigability" differences between men and women. Very interesting. So, if men fatigue more quickly then maybe their SFEMG's will look more dramatically abnormal. And maybe obesity or being overweight is one issue but maybe the "type" of fat above the muscle is an issue too.

http://ep.physoc.org/content/93/7/843.full

So, maybe women who have "mild" MG, can look normal because their "jitter" doesn't go up as much and may be determined as a negative test when, in fact, it is positive. And maybe because it takes longer to show "fatigue" on an EMG.

If I had more energy, I'd dig around more. This has been nagging at me for awhile now. Please let me know what you think of all this. Thanks for getting me thinking, Jana.