[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

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

Dear Alice,
I know this is a really old post, but I'm desperate for help. You write:

"there is also another study that shows that in patients with seronegative MG it is not that rare to have a normal SFEMG"

Do you know where I can find this? I have been treated for (seronegative) MG the past year, but now, after my third negative SF-EMG, my dr has changed my diagnose from MG to unclear muscular weakness. He now believes it is functional, something I can physically train to become better. I have a feeling he is wrong.

I have been on Mestinon, Prednosolone, and immunosuppression (Prograf) the past year. It has helped me gain so much strength. This makes be believe it could be MG even if my dr doesn't think so. So I need to read and find out as much as I can about if it is possible to have seronegative MG AND negative SF-EMG. The SF-EMG was made when I was really, really weak, from not taking mestinon for 22 hours. And the dr who performed it is a specialist who has worked with those tests for many years.

I am so thankful for any response!
Kind regards from Europe

Hi, Olle. Welcome to the forum!

Alice hasn't been her for a while. But I believe I can help.

When someone is immunosuppressed, the signs of MG will be reduced or disappear. There are studies, one done by the inventor of the SFEMG (Erik Stalberg), that clearly show that the SFEMG becomes normal while on Mestinon and immunosuppressants.

SFEMG.Info

The studies I found are in book form. I can't find the articles online. You could try to search PubMed. Or you could contact Erik Stalberg and ask him! He might reply!

Any doctor should understand this basic principle. The whole point of suppressing the immune system is for the disease state to be suppressed! Therefore, the signs of that disease (clinical and tests) are equally effected.

I'm sorry for your struggles and that they are now acting as though you're fine. When someone has cancer, has chemo and/or surgery, and the signs of cancer go away, do doctors then say that the patient never had cancer?!!! If someone has pneumonia and take an antibiotic and there are no signs in 2 weeks, does that mean they weren't sick? If someone has seasonal allergies and takes Singulair or Benadryl and the symptoms go away, does that mean they don't have an allergic response any longer?

This is a DANGEROUS way to think. If they take you off of meds and put you on physical therapy, for example, you could go into a MG crisis.

Did you have positive antibodies? How did they diagnose you? And if you didn't have MG, how do they explain suppressing your immune system for months (longer?) and subjecting you to the possibility of cancer and subjecting themselves to the possibility of a lawsuit! They are being rather hypocritical.

Are you symptom-free? If so, your doctors should consider you drug-induced remission. Please, don't worry! Sometimes you just need to talk their language in order for them to stop being, well, just plain ignorant.


Annie

Dear Annie,
6 months later, thank you so much for your reply. Im very happy to tell you that I got my diagnosis back by my new neurologist. I saw the top MG specialist in our country and she told me right away that I had been extremely mistreated at my previous neuro and that I do have MG... So, Im back on my medicines, happier than ever waking up to take the pills in the morning. Im just so extremely glad to simply be alive, dont know how I would have survived if I hadnt got the right help.
Just wanted to share the good news. Changing doctors, doing resrearch and being persistant has saved my life and I encourage everyone in my situation to do the same.
Wish you all the best!

Oh I'm so happy for you. I have given the same advice to my sisters. A lot of neuros are not as smart as they think.
Mike