You don't say what tests were done. Were they just the anti-body tests?

Have you had the EMG tests (the ones where they put electrodes on your muscles)?

If it is all in your head, have they explained what caused the crisis in February?

Mine is mainly in my face, eyes, voice, neck, breathing. Legs get heavy after 2 blocks.

If you search the forum here I am afraid you'll find a few others with similar stories to yours

As far as the tests are concerned, the EMG/single fibre can be very tricky to interpret. When I had mine done the doctor doing the test immediately called two students down so they had the opportunity to see what the results looked like for someone with MG. Further, it can be difficult to find muscles that are affected.

One other thing, ideally, you should not be on immune suppressants when the tests are done and should not take mestinon for 12 hours or so before the tests -- since this will reduce any impairment there is of your muscles.

I think all the anti-body tests (AChR and MuSK) are done at Oxford and I don't think you should worry too much about them not being done right. The problem there is there is a small percentage (around 5-10%) who have some sort of antibody, but which the current tests are unable to detect.

The bottom line is that the tests for MG can really only be used to confirm the disease, negative results don't really rule it out.

Now where that leaves you I'm not so sure. You did mention your eyes are affected. Does that mean you have double vision or droopy eyelids? If so, a neurologist really ought to take note of that -- it is rather difficult for double vision to be "in your head".

Helpful information. I didn't withhold Mestinon for 12 hours--It was 8 hours. I don't know how they diagnose it once someone is on the treatment.

The labs here are in Maryland, USA. Not good I'm told even by some doctors.

My eyes are droopy and blurry. I get double vision under stress or exerting myself too much.

I was first tested at Johns Hopkins by neuro-ophthamalogist. It was 3 hours appointment. They said it is MG.

That is good advice r.e. EMG//single Fibre=my weakest is in my face. It drops when Mestinon wears off. It is pretty scary. AT first I thought it was stroke. After Mestinon, the muscles lift and I can swallow safely, etc.
I also have to use speaker phone. Can't hold the phone up for a converstation. My voice gives out. I can't read more than 2 pages because the muscles give out in my eyes.

Where can one get closure to a diagnosis in order to get treated effectively?

Hang in there yourself. Glad IVIG was so helpful.

If you are on steroids or other immune suppressants then the EMG tests are trickier, because they can't just take you off them + in any case their affects are much longer lasting. This is one reason that the doctors try very hard to make a proper diagnosis BEFORE starting the treatments -- which of course seems really tedious when you are ill and just want to be better.

The fact that you seem to respond well to mestinon is a good indication of MG -- unfortunately doctors probably won't read too much into this as the response can be pretty subjective and they are always wary of placebo effects.

One good bit of news is that the Oxford labs have been working on a new antibody test for some time. They found that some types of AChR are not detected by the current test. It turns out that there are antibodies that only bind to clusters of AChR receptors + the current test does not have such clusters.

They have been working on a new test that can detect these clusters. I'm not sure how far off this test is from being available. From the research it sounded like the new test might provide a positive diagnosis for at least 50% of those who have MG but test negative to current tests.

It is pretty daunting to think I could never be diagnosed officially in near future since I am already under treatment.

I heard about blood tests here in America. They are looking for candidates.

Are the acetecholine//musk ok to repeat once I'm under treatment or will that impact on getting an accurate result?

You have a wealth of knowledge. Thank you for your help with this.

My pulmonologist is furious they haven't closed this case so I can get proper treatment. He sees MG a lot and is convinced as are many others.

Do you recommend Oxford?

I may be going to England if my strength allows but probably too weak.

I have zero knowledge of rules regarding international travel for medical treatment, but the Myasthenia Centre at John Radcliffe hospital in Oxford is where I, and many others, are treated. It is one of the very best centres for treatment of MG internationally.

Again though, no idea what the rules are about non UK residents seeking treatment there.

It is a true centre of excellence though.

Good luck with your treatments / diagnosis.