[Heat Intolerant]

Hi all,

The specialist who ordered my EMG and SFEMG tests told me that those tests aren't needed to know if someone has Myasthenia Gravis.

I thought you guys would want to know the new guidelines. Five months ago, the same doctor told me he would do an EMG and I got the testing approved. So this is new.

Does anyone have a copy of these guidelines or know where to find them?

Thanks

[AnnieB3]

Well, I think they're "phantom" guidelines. Maybe new ones are out there but I haven't seen anything. Anyone know of this?

Those tests aren't "needed" to know but most MG experts "require" them to be done. If someone exhibits all the clinical signs of MG and other diseases have been ruled out, plus there is some kind of positive test, it "might" be enough for a diagnosis. Yeah, I'm being a bit sarcastic because there really is not a consistent agreement among neurologists as to what constitutes an MG diagnosis.

Did you get an MG diagnosis?

Annie

[pingpongman]

Well when I started getting tested for MG they did the blood work and EMG both were negative. I was sent to a neuro-opt (I only had double vision) he did like a 2 hour exam of my eyes then walked in and said I had MG period. He said he didn't care about those other negative tests. He said in time they would be positive and sure enough my next bloodwork (3 months) came back positive.
Mike

[KathyV]

The only test I had was the bloodwork which was positive. Of course there were the physical symptoms of ptosis and double vision. Once the bloodwork came back positive neuro immediately put me on Mestinon and Prednisone. I'm currently just on Mestinon.

[Stellatum]

I'm just adding my story here, to help you get an impression about how, shall we say, "fluid" the guidelines are.

I tested negative three times for the antibodies. I had three SFEMGs: first one border-line, second one mildly abnormal. My neuro wasn't willing to diagnose me with MG on this evidence, especially since my symptoms are atypical. So he sent me to another neuro who did another SFEMG (stimulated this time, and on my face), and declared that I have MG. My first neuro accepted his opinion.

As you can see, there's not much official about any of this. Even my "diagnosis" isn't official--basically, the doctors decided that there's enough evidence to assume, for the sake of making a treatment plan, that I have MG. The doctor who diagnosed me said he was "comfortable" with the diagnosis. When I asked him what other possibilities were on the list, he said, "MG is about the first four on the list."

Does that mean it's certain that I have MG? Nope. It means that the evidence is good enough that it makes sense to proceed on that assumption.

You will read here heart-breaking stories about people with typical symptoms and negative blood-work who can't get treatment. You will read infuriating stories about people with positive blood-work who still can't get treatment. We have at least one member with negative blood-work and a negative SFEMG who does have a diagnosis.

Abby

[suev]

Those of you who have gone through dx shinanigans will get a chuckle out of this.

I am sero-neg, and very borderline SFEMG (as of tests 2 years ago). I take Mestinon every day as prescribed by my neuro (who was never hung up on the negative test results.)

So a few months ago, I apply for private healthcare insurance. I'm healthy with no dx documented by any test results. But I got rejected by every company to which I applied. Reason?

I take Mestinon and that means I have MG which therefore means I am only insurable through a High Risk Pool!!! .... with a high risk premium!!

Don't ya just love it??!!

[Heat Intolerant]

suev, do you think that maybe you weren't approved because someone with a credential didn't fill out the form for you?

If you could have a doc fill out that form, I would highly recommend the one I saw. He would definitely leave out that you take Mestinon! If you've had any respiratory paralysis, he would leave that out too. I have little doubt that he would leave out a borderline SFEMG.

When I saw him, he became very interested in my big toe after stimulating it with a vibrometer so the only caveat would be that you might get your toes tickled (the insurance company told me that none of the criteria for an EMG is based on the big toe and I had to explain that that was only a side perk and that actually I hadn't even wanted to be stimulated in such a fashion!)

If you apply elsewhere, PM me so you can get someone really good in that he knows the new guidelines for writing to an insurance company!

Everyone else, thanks for the comments. It sounds like the new guidelines have been in the works for a bit (maybe why they appear to be phantom) and entail listing the same disease four times in a DDx and a coven of neurologists who examine blood and electric shock data they collect (but only sometimes) mostly for sport but but sometimes not and without which activity they can still feel comfortable. I'll be on the lookout!

[tazzmom65]

I have long harbored the thought that those diabolical vermin were only shocking (aka tazing) me for fun and sport....glad I'm not the only one who feels that way!