Thanks for replies

Alice - yep I know its stupid preparing for this test like its some sort of exam! And it would actually help if they tested the muscles that are weak, like my hip flexors and shoulder cuffs (sorry dont know what there name is!). They do test around my eye. But they haven't even told me not to take mestinon, its only because Ive had the test before that I know not to take it.

Kendra - Ive never had a positive SFEMG or EMG. Luckily the guy Im seeing has done one of the tests before and his was the only test that was painless. If it had been anyone else I would have had serious doubts about putting myself through this again! All my tests have been done in the afternoon. I have only had one Jitter show on a test, which isn't enough to class it as positive, I needed several more.

Annie - Im off all steroids will have been off them for 10 months when I have this test. They usually test Orbus Oculi (I think thats what its called) My hand and arm and lower leg. Other than the eye, its none of the muscles that I have weakness in, so as you can imagine its extremely frustrating.

I just want to make sure that when I have the test I have nothing in my system that could influence the test. Such as caffine (coffee and cola), Nicotine, Chocolate etc. So that we have the best base line possible.

Im going to order some portable oxygen so that I can take that with me.

I know what you mean Annie about going off the mestinon for a couple of days. At the moment Im having it every 4 hours, even through the night.

Thanks for your help
Love
Rach

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 . . .

Ally

I pretty much feel like you. If I dont get a jitter or enough jitter on this test, Im afraid they will label me as a basket case, without a shrink ever being consulted!

I know you can have negative SFEMG and have MG. I know you can have negative blood tests and have MG. What annoys me is that most of the neuros I have to deal with dont understand that.

I respond to the ice pack test ( apply ice to the eye affected with ptosis and it opens). I respond to mestinon (although my gp reckons thats never been proved, well try I have ptosis and can barely move without it!). I respond to the rest test ( when you have ptosis rest in a quiet dark room for 30 mins and see if the ptosis resolves).

I febuary this year I met a lovely lady Dr from Iraq, who believed I had MG, because of the fact I responded to the ice pack test and the rest test and my response to mestinon. She explained in Iraq Drs didn't have much access to expensive tests and would go on ice pack tests and response to medication to diagnose the condition. However when I heard her explaining this to her consultant (she was retraining as she hadn't trained in the UK) he basically laughed her off the ward and told her we aren't in the third world now. The lady Dr was crest fallen. I never saw her again.

I have had the diagnosis of MG (due to my response to neostigmine) and then that was removed. I have been told I have Chronic fatigue syndrome. I have been told its stress and all in my head.

Obviously the CFS diagnosis and the stress diagnosis are affecting the way Im being treated by the medical staff I come into contact with. I feel like Im being treated like a "frequent flyer" (some one who seeks attention by claiming to be sick when there is nothing wrong with them). By getting a positive SFEMG it would end all of that. So like you Ally, this is very important to me. I worry that without a positive test they will then suggest taking me off the mestinon and then who knows what will happen?

Its a scary place to be.

Love
Rach

Ally, I guess I better clarify that "don't do anything the day of" thing!!! It's just that Rach is so bad off. If she pushes the day of, she may not make it to the appt.! With MG, you can push the day before and it can show up the day after. It's absolutely true that the results are better if you can wear out your muscles. That's one reason I've always wondered why they don't make patients do an post-exercise SFEMG. They do that in some parts of the world, like Sweden.

It's amazing how they change the MG "rules" to fit a situation, in order to make it look like we are malingering! No, the antibody is the Gold Standard; No, it's the SFEMG. You're fine, just go home and laugh. Or sleep more. Or get over some childhood trauma. Or anything else that is unscientific. Like you said, a negative doesn't prove anything - only a positive does (as my MG expert neuro, who is great, says).

Annie

"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!!!! "

I fully agree with that. but, we have to find the right way to do it, so we will be listened to.

alice

Hi all, boy, it's so hard to read 'bout the responses you are getting from the neuro "specialists".....just saw my neuro for check-up again, & he is STILL uncomfortable with my dx of MG....all the antibody tests are negative, & I told him that many of you are also seronegative but still are diagnosed with MG...the only criterion I have is a decremental EMG, & he still hesitates...whatever else would cause this??? & my clinical signs are positive, but they never see that...app'ts are always in the A.M. & even if I don't take the Mestinon, he doesn't see it, & without bulbar signs he's not convinced...I sure wish there was a better way to clarify things, maybe another decade or so....sooo frustrating...guess at my age I should be grateful to be somewhat functional, but I sure do miss my vocation & my horses...(wonder if a muscle biopsy would elucidate anything?)

Dottie

I wanna CRY!!

Oh, Rach, sweetie, HOW HORRIFIC!! I've got an artist friend on the Isle of Wight (hope I spelled that right) who has lost the sight in one eye -- and is threatening to lose the sight in the other (TREATABLE optic tumor) -- just because of stubborn, foolish, pig-headed, IGNORANT "mess" like this!!

Never having HAD the EMG or SFEMG, I don't have any advice. Well, maybe.......do you have pets in the house? Are they treated with any insecticides or pesticides? Has your house been recently treated for bugs? Anything like this "might" affect your results -- Mestinon, pesticides, and insecticides all basically act on our systems in a similar fashion.

I feel TREMENDOUSLY blessed today -- having been diagnosed ONLY on symptoms and on positive antibody tests (AChR) -- and, I guess "reinforced" by the fact that Mestinon works for me. *sigh*

Third World?? HUMPH!!! "Old time" medicine seems to be far more humane!!!!!

When I had my EMG and the other electrical stimulus test (I forgot the name just now) the doctor asked where I was the weakest. At the time it was my right hand and left side of my face. My right hand and left side of my face were tested. Made sense to me.

Maybe you should talk to the doctor performing these tests about your concerns. It makes sense to test the weak muscles since we all have different muscles that get weak due to MG. What point is there in testing a muscle that works fine?

I just gained understanding as to why my doctor waited until after these tests to prescribe Mestinon to me. I don't know if I could stop taking Mestinon to "prepare" for a test at this point. Mestinon is such a life saver and I would be afraid to stop taking it.

I hope your test goes well.

DOTTIE!!!! You are in Shiloh!!!! Where is your neuro?? Memphis, Jackson, or Nashville. We need to TALK!!!