I just wanted to comment on a couple of things. During an MG conference, the experts said that one of the reasons doctors are so hesitant about giving an MG diagnosis with out any black & white results, is because the meds that are prescribed are very serious, and can be life threatening. So they don't want to put someone on, say prednisone which can be very difficult to get off, or wean down. And some people end up having to be on it for the rest of their life because their adrenals don't want to wake back up. Kidney damage from some of the immuno suppresants can cause kidney damage. And once that happens, the kidneys don't re-heal themselves. It's permanant. IVIG can damage the kidneys. There are just so many health problems that can be created from some of these meds.
Call your neuro, and ask them if they would like you to wear yourself out, so they can test during a weaken state. My neuros always wanted to test me during the weak periods, and even put me through the mill before the Tensilon test. So give a call, and ask them. They'll be able to help you.
If you are in a weakened state, and have the emg, chances are it will show up easier than when you're well rested.
Best of wishes
Love Lizzie

Lizzie,

This is perfectly correct, and I do not believe that any patient in his/her right mind would want to recieve such treatment needlessly.
yet, one can't ignore the fact that those "black and white" results do not exist in neurology. and even more precise fields of medicine are not an "exact science". and it is said that if you do not want to miss any case of acute appendicits, you would have to be ready to have some "white appendixes"taken out.
the "objective" tests that they use to diagnose this illness (and many other neurological diseases) have significant limitations.
and although many neurologists and patients think that if they could only do the test under the proper conditions it would "work", in reality this just doesn't happen. (because of all the reasons that were mentioned).

this is an answer I recieved from a reputable internet site-

Question:
is it possible to have a normal SFEMG during a myasthenic crisis or near-crisis. eg-when there is severe generalized weakness and respiratory difficulties with a concomitant drop in the MIP and vital capacity. if not what is the possible alternative diagnosis. and what further tests need to be done, in order to verify it.

Answer:
No, it is not possible to have normal SFEMG in muscle weakened by MG. So if you have generalized weakness and a weak muscle showed normal SFEMG results, the cause is something else. There are other possibilities but it is not at all a good idea for me to speculate over the internet. The key is to work directly with an experienced neuromuscular specialist. An accurate diagnosis requires a solid doctor patient relationship. It is also always fine to get a second opinion.


I have not yet been able to recieve an answer from any neurologist I talked to as to what that "something else" is. All I can tell you, based on my own experience the only "something else" that they have in their differential diagnosis is some ill defined emotional problems, that only they can "see". as neither you, your family and friends, or even excellent psychiatrists are capable of understanding such complex emotional problems.

further more, I am not aware of any test to which I (or any other reasonable physician) could give such a categorical answer.
if you asked me -could a patient have a myocardial infarction with a normal EKG? I would answer that this is very unlikely, but indeed possible.
if you asked me- could you have a patient with leukemia and a normal blood count? I would give you the same answer.

the SFEMG is a surrogate marker or a very different biological event.
all it tells you (if it is done correctly and under the right conditions) is that there is a normal conduction of the electrical signal from the nerve to the muscle. it gives you no information what so ever, as to how this electrical signal translates into the muscle contraction.

it is true that in most patients the curlpit is in this process and they do have an abnormal transmission of the electrical signal, but what about the minority that don't? it is not only that they do not recieve immunosupressive treatment, they are deprived of any treatment what so ever, and treated with disrespect (to say the least).

further more, some patients that have diagonstic SFEMGs do not have an autoimmune disease and do not require immunosupressive treatment, as they have a genetic defect as the cause of their illness.

and there are quite a few reports in the medical literature of patients who recieved agressive immunosupressive treatments and were later found to have CMS.

medicine is not an exact science and neurology is in the most un-precise side of the spectrum. myasthenia is not the best understood autoimmune disease, and not the most easy to treat. it would be nice if it was, but it's not.

and trying to "fit" patients into "black and white" boxes, ignoring their clinical symptoms, can only lead to much more significant mistakes.

this is at least my oppinion.

alice

Hey Alice,

This might be a really weird question, but where would the needle be inserted for SFEMG if a person has respiratory weakness? I know that for me, they put the needle in my forehead because I had facial weakness (or maybe they were checking my ocular muscles, not sure...I didn't have ptosis or dv at the time the testing was done, though)...This is why I think that it would be odd to use SFEMG in a case where a person has mainly respiratory weakness, just because I have no idea where they'd put the needle...I'm prollly totally missing something....But it seems that if that is the case (that it wouldn't be possible to measure that sorta weakness with that sorta test), they should base the diagnosis on symptoms, response to meds. and/or blood tests (if the weakness is isolated to the breathing area)...

As to whether you can have a heart attack and have a normal EKG, I witnessed this with a patient in the next bed to me back in february during the admission where I met the lovely lady Dr who practiced "third world" medicine!

A gentleman in the next bed to me (yes it was a mixed ward and I was assualted by a male patient with dementia whilst sleeping - god bless the NHS!) came into hospital with chest pain that was radiating down his left arm. His EKG was normal and he was on the emergency medical unit for observation. The first consultation was at 8am - I was being nosey and listening! The Dr told him he hadn't had a heart attack and it was probably indegestion.

Then at 9am they came racing back to the bed. One of the medical students had drawn blood the night before. The results had come back in and showed an enzyme present in his blood that would only be there if he had had a heart attack. The patient was then told he did indeed have a heart attack the day before and would be seeing the cardiologist later that day. It was only due to the person ordering the blood test the night before that this man wasn't discharged.

Ok so back to topic. I am planning to try and ensure that Im in a weakened state for my SFEMG. Its going to be difficult as the appointment is 3 hours away by car. But I plan to try and repeatedly move my arms and legs before hand to see if it provokes a response!

Thanks to everyone who has posted on this thread.

Love
Rach

Alice, This is true, but what the MG expert was saying is, that the Neurologist wants to be certain with in reason before he starts treatment with serious meds. I for one am thankful for a thorough doctor.
I will admit that it was me who didn't believe I had MG at first, so I did want several opinions, but unfortunately they all agreed. I had to come to the conclusion that I needed to trust them, and their diagnosis.

Not everyone has MG, and at some point we may need to trust our Neuros. More often than not, I believe the doctor is wanting to help his patient get better, and feel relief from the symptoms they're feeling. It's important to keep searching for a neurologist that understands MG.
However;I've read posters in the past, say over and over again, how this neuro was awful, and after seeing 10 different neuros who all say the same thing, " I don't Have Myasthenia, so I don't want to go and find another, they're all bad" Well, just maybe the person doesn't have MG, but something else that has many of the same symptoms. At some point we do need to understand that maybe it's something else, and just maybe we need to trust that the experts really do understand, and just honestly don't believe the person has MG.
This is why I tell people, "listen to your Neuro, or discuss this with your neuro" , Because chances are their doctor knows more than me about them.

Now, having said all that, I also will say, I've had my share of some real jerks, but I moved on to someone who was more experienced, and easy to talk to.
We need a balance.
But when it comes down to it, treating someone with immuno-suppressants who may not have MG, is a huge risk to that person's health. Doctors may not want to create more stress on their patients.
We need to put some trust in the specialists who deal with this day in and day out.
Love Lizzie

You've all had great posts.

And what if that patient is on steroids, like Advair, which make MG "disappear" and the doctor does not even bring that up? There are so many variables in the diagnostic process, as you all have brought up, that a GOOD neurologist should be able to put into perspective.

This is one of my favorite quotes, and way of thinking.

“When you have eliminated all which is impossible,
then whatever remains, however improbable, must be the truth.”
Arthur Conan Doyles’ Sherlock Holmes

I had two SFEMG's done by an MG expert. The first time I wore myself out a bit and it was borderline. The second time I didn't wear myself out and it was negative. Again, I think either my normal jitter is "below normal" or my weakness doesn't "go downhill" until I wear myself out. And when you have a SFEMG, you are just lying there. What if the whole autoimmune process doesn't get "revved up" until you are moving around? AND I am on Advair and the Flovent in Advair goes systemic. A steroid is a steroid.

I have very obvious ptosis and other clinical weakness. I had a positive Tensilon test (only 2 mg. needed to diagnose) and respond dramatically to both that and Mestinon. And even though I didn't find out until 12-28-08, I have positive AChR antibodies. So, because my SFEMG is only negative to borderline, do I NOT have MG?!!!

If you saw my "before and after" faces, with the lines I have drawn through them to compare them, you would know I have MG. Why aren't doctors using ALL of the tools that would diagnose an MG patient? Like cameras. Like PFT's off and on Mestinon? Like exercise EMG's?

If it's so hard to find something, then you need all the clues and tools you can get to find it, damn it.

And if doctors would get their "fear" of being sued out into the open, then it would evaporate right before their eyes. All we patients want - most of us - is to feel good.

It took my entire life to be diagnosed (had "lazy eye" diagnosed at age 10 when it was really fatigable ptosis). And it took from my discovering my ptosis in 2000 until 2001 to get diagnosed, in another state. And then none of the neurologists in my state helped me because the first one I saw screwed up in 2000 and got the "word" out that I was fine so he wouldn't be sued. Who knows what else he said - though I do know it was not pleasant (from a recorded appt. from one of his neuro pals).

I'm so sick of all the childish games, inability for neurologists to do their jobs well and to treat all of their patients with the respect they deserve that I can hardly stand it anymore. I have PTSD from this, and other life-threatening medical experiences. If they can't figure something out, why do they give up? Why do they then blame us? Or, like you said Alice, label us with some damn pseudo-psych or psychological illness. In the meantime, we can't work, pay our bills or do anything because we aren't well.

I almost can't talk about this issue it upsets me so much.

Annie

Is this really true I mean ... I saw a top Neuro, spent over $2000 to travel there to see him and he spent 5 mins with me , I did a few chicken flaps and then that was it..... cos my blood test and EMG were negative.

No one told me about the steroids...

I looked up Advair and it is 500mcg a dose - so 4 doses a day would equal what ? 2 mg ? I was taking 6mg of an oral !

Could 2mg really affect the MG results enough??...

??

Me too. 30 years ! The fatigue has been mild and intermittent...but non the less I have suffered verbal abuse and discrimination all my life ( called lazy , could not play sport/run , have a social life after work etc )...

I realise that MG would never have been dx 30 years ago due to lack of understanding back then. But now ? Why do I have to wait another 10 years to be dx ? If ever. It does make you feel mad ...and a little cross...

However;I've read posters in the past, say over and over again, how this neuro was awful, and after seeing 10 different neuros who all say the same thing, " I don't Have Myasthenia, so I don't want to go and find another, they're all bad" Well, just maybe the person doesn't have MG, but something else that has many of the same symptoms. At some point we do need to understand that maybe it's something else, and just maybe we need to trust that the experts really do understand, and just honestly don't believe the person has MG.

Lizzie: I'm probably one of those people that you're referring to who went to several different neuros, stubbornly insisting that they were wrong and I was right. I understand about what you're saying when you say that people need to keep an open mind about their diagnosis. I absolutely agree that that can keep people from discovering what's really wrong with them. I worry sometimes when I read some stories on this and other forums that people are cutting off other possiibilities. On the other hand, I just want to point out that neuros can be wrong. Call me stubborn, but I'm glad I persisted until I finally saw an mg expert who was able, in 5 minutes, to give me an mg diagnosis. I went to 5 neurologists who all told me that I didn't have mg, despite having two positive antibody tests. BUT, they also told me facts about mg, actually absolutely insisted on facts about mg, that I knew were just plain wrong. Things like: there are a lot of false negatives with the antibody test, you don't need a cat scan because mg has nothing to do with the thymus or any type of cancer, mg symptoms never change - once you get a sypmtom it's constant and never gets better or worse, SFEMG is not an appropriate test for mg, SFEMG is an appropriate test for mg and those results trump antibody tests and only need to be done on one muscle, if you have side effects with mestinon than that's a strong indication that you don't have mg.

I was discouraged, scared to death, dismissed, sneered at, and almost everyone I knew thought I was crazy. But my philosphy was that when I met a doctor who knew as much as anyone with a good two hour google search under their belt and that doctor told me that I didn't have mg then at that point I would believe it. But until then I wouldn't give up.

So yes, I completely agree with you. It's important to keep an open mind, listen to the neuro, consider carefully. But if someone really believes that they have a disease and really after very careful consideration and research still believes then they need to listen to their own instincts. Keep trying and don't let yourself give up.

I have a feeling that you live in an area with very good neuros. I think that's wonderful - I wish I did!!!

Rach: I wish you the very, very best. I hope that they can find something in your upcoming tests. From what I've read recently, I think it's a good idea to wear yourself out, even though it's going to be difficult. Good luck!!!!!

Ally

Awe, Alley I'm so sorry you met up with so many uninformed neuros, but it sounds like you needed a specialist in Neuro Muscular diseases. Not all neuros are equal, and its very important to find a neurologist who has experience with MG. It's unfortunate that the neuro who did the antibody test didn't trust the results. One can have false positive, or false negative, and one can also have the antibodies show up one time, and then when the MG isn't in a flare, it not show up.
You're not one of the ones I was referring to, it was actually one in particular really. Once a while back, no one here, there was someone that had some MG symptoms, and many symptoms that were not MG. This person went to some really good neurologists who were very informed about MG. They told her that she didn't have MG, but probably something else. She refused to believe them, and to this day, is still searching for a neurologist who will say she has MG. So actually it was she about whom I was thinking.
I thought it so sad, and I did and do believe she has something wrong with her, and is desparate for a diagnosis, but I really personally believe it's probably something else.
I do have a wonderful group of neurologist, who are indeed very informed about MG. I know I'm blessed, and I know not everyone has that blessing near by. What I would reccomend is for a person to get a hold of their local MDA, and find out who has experience in MG. (doesn't have to be a neuro, sometimes it's a rhuemotologist (sp?)
I wasn't trying to be offensive, or trying to offend anyone. I just don't want people wasting valuable time going in the wrong direction. I want them to feel relief as soon as possible.
Much Love Lizzie

Hi Nicky,

sorry for missing your question before.

your question is not weird at all, but actually very smart and reasonable.

and you are right that it is somewhat odd to examine the occular muscles of someone who is mostly having respiratory problems, but this is in fact what they do, as they can't do a SFEMG of the respiratory muscles.

they can do a RNS of the diaphragm, but the accuracy of this test is quite low, and requires a very experienced person to do that.

they can also measure the force generated by the diaphragm directly, using magnetic stimulation of the phrenic nerve (the nerve that innervates the diaphrgm). but this is only done in very few places in the world, requires a specialized center with expertise in neuromuscular respiratory problems, and is a somewhat invasive procedure.

alice