[QUOTEI 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


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.

.[/QUOTE]



Annie,

there are many biological differences among men and women, and this is being gradually recongnized over the last decade. and diseases do manifest differently, normal values of tests are different many times, and even tests such as a stress test are of different accuracy. but beyond that there are numerous problems with the SFEMG.

the bottom line is that it is not as accurate as those that use it would like to think.

all a normal SFEMG can tell you (assuming that it was done properly and there are no technical problems, or missinterpertation such as you have reffered to among others) is that there is a normal transimission of the signal from the nerve ending to the muscle fiber.

but what if the problem is after the receptor? what if this electrical signal is not properly translated into a muscle contraction?

it is like your computer is not working properly, and a technician comes, sees that it is plugged properly into the electical socket and says to you that there should be no reason for the computer not to work properly.

there are multipe steps from the activation of the acetyl-choline-receptor to the generation of muscle contraction. and all those steps should work properly, in order for muscle contraction to occur.

very schematically-calcium goes into the cell, it then leads to the release of calcium from intracellular reservoires (this is governed by other receptors, which are activated by calcium that enters the cell, but also caffeine and other pharmacological agents), this in turn leads eventually to the "sliding" of myosin and actin, which leads to shortening of the muscle fiber. each of those steps involves multiple proteins, many of which function is poorly understood at this point. MuSK, DOK-7, Rapsyn- to name a few.

I was quite surprised to find out that the assumption that any process that leads to fatiguable weakness should also involve the acetyl-choline receptor directly or indirectly, is not based on any evidence.

to me it seems that certain "axioms" have been created over the years, which are enforced by everyone agreeing to them. or as in the "hunting of the snark" by Lewis Caroll- what ever is said thrice can't be wrong.

and most patients don't "dig" and try to understand, they just accept what they are told. I probably would have done the same, if it wasn't becoming totally ridiculous, and if I didn't have an enormous amount of "thinking time" (thanks to one of the world leading experts, who gave me treatment that totally "knocked me down", and gave a few months in which I could not do much more then think, most of the time) .

alice

nice to meet you too.

Annie, you are thanking ME?? Thank YOU!!!!!!!!:hug:

Hello,

I am Sonja from Belgium. I'm the person who had the single fibre that was negative.
Thank you all for the answers. I'm gonna give the doctor a call tomorrow!

Sonja

Hallo,

I am Sonja from Belgium. I'm the person who what the negative sfemg. I don't have antibodies but I have had a positive tensilontest.

:)

YAY, Sonja!! So GLAD that you joined us!!!

(((HUGS)))
jana

Thanks, Alice, that explanation is exactly the one a neuro gave me once. He's the kind of neurologist who wouldn't dare go against the "status quo" openly but would talk straight to a patient.

I imagine that when someone says "I'm right" for decades, it might make that person - and their colleagues - look unprofessional or unethical if they said now that they were "wrong." And it might make others not trust them again. Which, in my opinion, is super silly. None of us are perfect. And science and the human body is never easy.

One problem I have with this is that these "professionals" aren't thinking. Or learning. Or they know all this and are hiding it. Like you said before, Alice, "hoarding" the information until they can make the next "great discovery" or drug.

What makes me literally crazy about all this is that so many patients are suffering. Patients who so obviously have fatigable muscle weakness.

Hi, Sonja. Welcome. I hope you will start a post and tell us about yourself! Sonja, I would add to that . . . get the copies of ALL your tests. I had a positive antibody back in 2002 and my doctor didn't tell me about it nor did he give me a copy. It wasn't in my records either! I had to go to the clinic who ran the test to run it down - seven years later.

And, yes, Jana, it was indeed you who stirred all this up (via Sonja). So thank you both.

Annie

"He's the kind of neurologist who wouldn't dare go against the "status quo" openly but would talk straight to a patient."


that's a shame. because it seems to me that unfortunatley most of the more open-minded, humble neurologists are intimidated by the more arrogant ones. I have to admit that I have not seen it to that extent in any field of medicine. although, medicine does tend to be hirerchacal and there are those who are considered leading experts in every field.


"I imagine that when someone says "I'm right" for decades, it might make that person - and their colleagues - look unprofessional or unethical if they said now that they were "wrong."

this in fact is not true in science or medicine. many approaches that were considered "state of the art" 20 years ago, are now abandoned. the advances in medicine are dependent on constant constructive criticism, questioing of what you have known, in view of new evidence, some degree of skepticism (obviously you can't make major changes in your managment approach based on anecdotal evidence).

this is true for the specific patient as it is for the entire field.
I have used this quotation from the "hunting of the Snark" when as a resident I presented a patient in which we all went wrong (including me), during morning conference. I talked about the dangers of being given false reassurance about your (in this case completely wrong) diagnosis by the fact that all the rest of the team thinks like you. I said that there was a hidden clue that we all missed, because we didn't have to think too much about the diagnosis as we already "knew" what it was.

As physicians we have to be ready to admit our mistakes (as hard as it is) and be ready to learn from them and from the mistakes or others as well.
I think that this was one of the best parts of my training that we had those conferences, where we discussed medical errors, without pointing fingers, but in order to learn as much as we can from them.


"What makes me literally crazy about all this is that so many patients are suffering. Patients who so obviously have fatigable muscle weakness. "


I fully agree with that, and feel the same way. and that is why I am trying to do everything within my ability to change that.
the amazing fact is that the neurologists know it as well, but just see it as some "natural disaster" they have no control over, and can do nothing about. instead of understanding that some of it, at least, is due to their own missconceptions. (at least this is the conclussion I have reached after almost a year of learning as much as I can about this illness, and the way it is managed-from the patients, the medical literature and the neurologists, and I know that many physicians and patients will not be ready to accept what I say).

I know that at least in my case they have made serious managment errors, based on such missconceptions. and I am quite sure that I am not the only one. although I am really not sure what the true extent of the problem is. and how many more patients are missmanaged, but sort of accept it, and think that it is OK.

according to the leading neurolomuscular experts, it is very rare for a patient with MG, to be missmanaged in that way, once they have reached a good MG center, and had all the proper tests, but I am really not sure how true this is.
my own experience is very different.

alice

Hi Alice,

I got an email-adres from Prof KUKS in the Netherlands. I wrote him bij question about the single fibre negative, antibodies negative and that the doctor concluded that if he couldn't see it in the mussle I don't have mg.
I've got a mail back, he says that there are exceptions with seronegative mg, different variants.

I called my doctor about it but offcourse he didn't liked that, he says he has a lot of experience with single fibre and he has never had a patient like that.
Then i thought offcourse not because he sends them back home without nog diagnose.

I believe that you are unfortunately quite correct in what you are saying.

I also do not think that there is any way for you to convince this doctor that he is wrong, even if there are others that think differently.

my practical advice to you, is to find some one who is ready to accept this, even if it requires some efforts. why not go to the neurologist who wrote you this e-mail?

alice.