How have you guys done it? I am about to either scream, cry, or laugh hysterically, not sure which one yet! I went to neuro for something that has absolutley nothing to do with MG. Well in the labs she ran included the acetylcholine receptor antibodys. These came back positive, surpise! So, next we do a CT of my chest. That showed an enlarged thymus. I am thinking, finally! Something that explains the weakness I have had over the past several years. I am so excited to have an answer and to start treatment. Maybe see what symptoms this was causing. I even called the docs office to see if they even needed to run the single fiber emg, after all I have two of the antibodies and my thymus is enlarged, I mean duh! They said no, we had to do it. So, hear we go with the single fiber emg. NEGATIVE! WHAT DO YOU MEAN NEGATIVE?!!?
So this doc is now telling me that I have one test that tells me with almost absolute certainty that you have MG and you have another test that tells you with the same degree of certainty that you don't have it. WHAT IN THE WORLD??!! He told me he has no idea what I have and that he is recommending to my regular neuro (btw, two months ago I had 2 doctors, now I don't even know how many doctors I have) that we have a medication trial. If I respond to the treatment, we know I have it. If I don't respond, I have to have another single fiber emg, this time of my face and eye.
OMG, WHAT?? This is where I want to either scream, cry or laugh hysterically. I mean, is there any other way to respond to this? I think I have been extreamly patient through all this, but this is getting out of hand. I appreciate my instant gratification and this is nothing like it.
Anyway, that was my little vent. Mostly, I just want to know if there are other people with similiar results. I just don't understand how I can have the antibodies and an enlarged thymus but have a normal emg. What adds to the pile o' luv is that the same darn thing happen with my lupus tests. One test said I almost certainly do have it and other says, nope you don't. My lovely primary doctor told me I need to not be so strange. I told her she was right.

All I can tell you is this, from my years of this frustration:

I am told they prefer 2 of 3 positives to officially dx MG - Antibodies (I'm negative); EMG (I had a VERY positive test in 2004); and medication response (mine was to the Tensilon injection in 1996).

My 1st EMG was negative, but I know the neuro was having trouble getting his baseline (kept shocking me and apologizing, then told the assistant "well let's just go with this - I don't want to keep shocking her" - then he got indignant when I questioned the results of the test - nimrod!).

My last EMG was negative, but my research online tells me that was probably botched too. The prescribed way to test for MG on EMG is to test more than one muscle group and to test proximal (closest to the body) muscles. I got that info off a website for medical professionals, and that goes along with the tests that came back positive for me. The muscles that showed strong positives on me were in the trapezius (neck/shoulder/back) - 76% decrement, the face - 23% decrement. The muscle closest to my hand only showed minimal decrement.

The neuro that did this last test ONLY tested the one next to my hand - that muscle is one of the last to go on me.

It is really frustrating, but if you have a neuro that is wanting to test the meds on you know, you're at least ahead of some of the experiences I've had. That first guy told me they had done all the tests (neuro-wise) on me and my problem was depression and actually called my family doc and told him I needed to be in a pysch hospital for observation!
His notes pretty much blocked me from getting anyone to take me seriously after that.

I'm older and wiser now, and have learned to research my butt off, look up med terms I come across that I don't understand, and fire a doc that has a problem with me being very interactive!

I also searched the i-net to find a doctor rating site and found that the neuro I have most recently been seeing doesn't list neuro-muscular or MG as one of his special interests. I will now be seeing one who does this Thursday. I figure none of us has time or money to spend on someone who is not really up on our diseases, and I know they call it "practicing" medicine, but I don't want my docs to use me for a guinea pig to further their education on my dime any more than necessary.

Hang in there. I don't know what med trials they want to do on you, but remember that not all MG treatments works the same on all MG'ers, and they all (except Tensilon, but it's about a 30 minute help is all, and sometimes Mestinon can give relief quickly but it's a band-aid drug and they have to get the dosage JUST right for optimum affect) work rather slowly.

I'll be sending lots of positive thoughts your way that you can start on the road to treatment and get off the roller coaster of diagnosis!

Hi jaynurse05,

Welcome to our little neurotalk site. I feel terrible that you have had conflicting results, there is nothing worse when all you want is a definitive answer. I was diagnosed about 5 years ago and my neuro ran the same tests as you - my labs came back positive, emg - only minimal decrement (in fact the neuro who ran it said he didn't think I would show any mg symptoms), and CT all clear. I responded to Mestinon straight away though, so got my diagnosis. Since then my sympotms have changed radically and last year my classification changed from mild generalised to moderate. Thankfully I've never hit crisis point though! I think my emg didn't show much because it was done early in the morning, when i was well rested and was done on muscles that I didn't have any trouble with at the time (arm etc). I also was quite fit when diagnosed (used to hike, rock climb, do a lot of heavy lifting at work, etc) so I think my over all muscle strength compensated a bit for the weakness I was experiencing.

I think you should definitely keep at your docs for an mG diagnosis - esp with your enlarged thymus - that's a pretty strong indicator in my opinion (obviously not a medical opinion though). Have they discussed surgery with you? We are all so different, but it certainly sounds like you are showing early signs of MG to me!

Good luck in your quest for a diagnosis. Hope you feel better! Try eating some bananas - they are my wonder food.
~Kathy

Hi. What you are describing is actually normal to have happen. I know, sure as heck doesn't make you feel better to know that. I'm sorry you are going through this stupid doubt from doctors. I actually think it's more about them and their frustration in not having a magic bullet test than it is about your signs, symptoms and test results pointing to MG, then not.

The fact is that SFEMG's are NOT positive in all people with MG. If you read a lot of the reputable studies, it's clear that they aren't. No test for MG is 100%. And there are even some MGers, like me (so far) who only test postitive for the modulating antibodies.

There are other drugs, like Advair, which interfere with EMG's and antibody tests. Even a small amount of steroids can make it look like you're fine.

I laugh when I hear or read neurologists say that MG is the most well-understood autoimmune disease. If it was, it wouldn't take doctors YEARS to diagnose us now would it?

The SFEMG can be negative if done in a muscle that isn't clinically weak and if it's early on in the disease process. It can also be negative if the person doing it is not REALLY good at it. And like I said above, it can be negative if you are on certain drugs like immunosuppressants (their "job" is to make the signs of MG disappear!).

Antibodies don't occur for no reason. Period. I know neuros see the SFEMG as the gold standard but they might want to start thinking in other terms since so many MG patients are not getting a firm diagnosis because of that. And then they are not getting the treatment they need right away either.

Mestinon too can affect the SFEMG, if you're going to have one again. There's even a study that states that Mestinon suppresses the humoral immune system and, therefore, can affect antibody production. So Mestinon may wear off within umpteen hours but it's effects may stay in the system much longer.

After all I've been through, I guess I would suggest doing something fun. Stress is not good for MG, and you obviously have it. It'll also help you take a new, fresh approach with your doctors if you are not full of stress. You might actually have to act like the "parent" and state the obvious like "then why do I have MG antibodies?" and watch them backtrack on their stance that you don't have MG.

One note about lupus tests. I volunteered to our local chapter for 10 years so I know a lot about it. When you have an autoimmune disease like lupus, you never get rid of it. Even celiac disease is still there and can't be "cured" but at least you can get rid of the symptoms permanently with that one. Lupus symptoms will come and go. You can flare with stress, heat, etc. just like with MG. So the test results can "flare" too!!! You can have normal lupus tests one month and literally have them off the charts the next. That's why it's good to have them tested when you are in a flare.

I hope you can get definitive answers soon. Like Scots Kat said, it is the worst position to be in.

Annie

Hey there! I was sick for a long time with different things and thought I had MS or RA or SOMETHING but it took an actual crisis, my face freezing up, my no longer being able to walk to talk to be diagnosed!

I saw many, many dr's who never mentioned a neurological disease, only sinus problems, TMJ, etc.......I thought I was crazy.

The only bright spot was that when my neuro finally did see me, he diagnosed me within 5 min or so.......so I can't even understand what you are going through.

I am so sorry it is so hard to be diagnosed. It is a real pain in the butt!

Hang in there!
Erin

I want to thank the people who responded. It really does help to know that I am hopefully not done in by the negative SFEMG. I admit that this is extremely frustrating, but having some imput from others does help. I don't know when I see my neurologist again, they call me after my tests to schedule my appt. I hope to know more then.

Hang in there, honey! It does get better! MG sux - plain and simple!

I know it is a small consolation but you do have us! We do know what it is like and are all pulling for you!

Big, big hugs!
Erin