Hi Annie,

Thank you so much for replying.

I'm 45, so it looks like the mean of the mean was in the abnormal range.

Reviewing all of this, there appears to be a discrepancy between the report and the letter. I think that that is where the problem lies. I'm going to assume that the original report is correct and that the frontalis is abnorma as was stated in the report, as you say 33% is pretty high, and the ocularis is borderline abnormal. I'll have to wait to hear back from the neuro to confirm that, of course. But since all of the data is in the original report, written 2 months ago, then I'm going to assume that that one is correct.

And yes, you are right - the 11% finding was accompanied by no increase in mean MCD so that would seem to lend itself to a borderline finding. Of course I'm no expert either, I'm just trying to piece this together.

Yes, I remember Bell curves. I've completed all of the graduate coursework for a master's in applied math and statistics. So I remember Bell curves, and gamma distributions, and logarithm distributions, and all of that. I understand confidence errors and standard distributions too, so I know what you mean. In fact, I was excited to see a mean of a mean since that was my favorite proof in grad school. And if that doesn't convince you that I'm a total geek I don't know what will!

I understand your point that this doc isn't a neuromyotonia expert. But we did discuss it quite a bit and he did ask his fellow to look up cramp fasciculation syndrome. He definitely left me with the understanding that that was something that he would look into and that he would discuss as part of the gameplan he would prepare for me. What he told me was that he would have several suggestions - on top of mg - that my local neuro could pursue. That's why I was disappointed that there was no mention of anything at all in the letter.

He did say that all indications were that I had mg. Sort of. I have it, but not full blown I guess you could say. Don't spend too much money on her, basically. I think that part was referring to immunosuppresants. No corticosteroids - it might make me fat. I'm being a little loose with my paraphrasing here. He really did say those things, but in a nicer way. And I can understand the corticosteroid thing as I am given to apple shape but only 7 pounds overweight officially. Still, if you measure that against the fact that I struggle everyday to get by it doesn't seem to count for much, in my always humble opinion.

I think that what you say about there needing to be centers for the undiagnosed is very, very wise. I look at all the money that has been spent in my case and it's a lot and most of it has been wasted. Most doctors will run and re-run tests and then wash their hands of difficult cases. The only problem, financially and humanely, is that we don't just disappear. Maybe they wish we would and, personally, there have been plenty of times when I wished I could too. But of course it doesn't work that way. Doctors of course don't get the support they need to spend the time and resources getting to the bottom of these difficult to diagnose cases, but I really think that in the end an idea like yours would save enormous amounts of money. And so much suffering.

Thank you so much, Annie, for taking the time to reply to all of my recent posts. I know it's really hard to deal with somebody, like me, who is angry and frustrated. The instinct of course is to run away! Or think I'm nuts. So, thank you so much!

I will take a breath now. You're right that I need to do that. If I could take a magic wand and make all the frustration and despair disappear I'd do it in a second. Don't have one of those, so I'm going to try watching Dancing With The Stars instead.

Ally