I to laugh when I read Alice's post because that's EXACTLY how I feel going into these same tests that I'm getting in mid November. I feel like I have to prepare just right because if I don't then my life is probably ruined!!!! (I'm laughing at myself here, reminds me of my teenage self before taking the SAT :^) - college entrance exam for those of you over the pond). It is ridiculous because it's not looked at in context. I mean obviously, Rach, you've got some pretty obvious symptoms. Tests don't make those go away!!!
Anyway, I read in an "Ask The Expert" site that the muscle had to be good and tired for it to really show a lot of jitter. So I was planning on pushing myself that day. But now I'm reading, Annie, that you say to take it easy. So now I don't know, although I'd follow Annie any day over your general mass produced robo-neuro. But here I go again. It's like trying to game the SAT. Silly, really. And yet I did have a well respected neuro tell me that the SFEMG results trumped an antibody result (NOT!!!! I wanted to scream, but didn't. I can behave myself
) and then I was summarily dismissed even though I'd had the worlds tiniest SFEMG (one muscle) by someone who I am guessing had not had spent a lot of time with the SFEMG machine.
So why is it that they don't routinely ask you where your weakest muscles are before they do the tests? That seems like such a simple and obvious step to take. Is it because someone created a system of comparison or a table of qualifying values and now only the original muscle groups can be used? It's like someone was mentioning (I'm sorry to whoever it was I don't remember who exactly) that it's silly to take the best of the pulmonary results. They should do 5 to10 runs of the same test and look to see if it gets weaker. These are absolutely cost free ways that could improve testing enormously in my opinion. It seems like they took the asthma test and just slapped it onto myasthenics. Also (while we're on the subect
) why is it when I tell a neuro that my weakest muscles are the triceps they give me a plastic smile and go right ahead and test my shoulders. I don't know!! If we could get video of all it would make a great slap stick comedy. Show the computer screen that says normal result while the patient stumbles out gasping for breath. Then a scene while the patient is tested on her strongest muscles, is told to get up, handed a pile of paperwork and collapses like a souffle. I could be filmed flying through my neuro exam only to suffer a humiliating defeat in a game of pattycake at the hands of the neuro's 3 year old daughter.
There's so much for mg'ers to do! So much to be explained and fixed and thought through. We may be the most out of breath, nap needing army in the world but at least we have our wits about us, and a great deal of insight. I really think we need to get together somehow and kindly, clearly, firmly speak up. Really! Because we fellow mg'ers are the missing link!!!! Ooops,that didn't turn out quite right. Hee hee. I for one am not quite so hairy.
Still, you get my point . . .