Hi, Kay. Welcome to the forum!

Do you have an actual copy of all results? These days, they usually only do the binding and modulating antibodies. Blocking is represented within the modulating results (meaning that modulating trumps the blocking results).

If you have 39% blocking, that's fairly significant! Obviously that doctor was not a MG expert or he would've known that.

Antibody tests fluctuate greatly. MG is a clinical diagnosis that is backed up with tests, such as a RNS, EMG, and/or SFEMG.

The fact that you're responding to 60 mg. of Mestinon is significant. Do you have any side effects?

I agree with you about the MRI. Why radiate yourself without a GOOD reason to do so?

What are your symptoms? How long have you had them?

Sensible tests would be vitamin B12 and D, since so many people are deficient. But, if they're abnormal, that doesn't mean you don't have MG!

Do you have symptoms of lupus or arthritis? If so, you should see a rheumatologist, not a neurologist!!! I can't stand when doctors act as though they can thoroughly evaluate another specialty. Any lupus, arthritis, or myositis testing (which is what the creatinine would mainly be for) should be done after a health history and exam by a rheumatologist.

As far as the AMA multiplex (genetic testing), that's not normally done without a high degree of suspicion of a disorder AND after other testing is done. You know, thinking (by the doctor) would be quite useful in your situation BEFORE testing!

http://www.ama-assn.org/ama/pub/phys...nion2139.page?

Have you already had a serum protein electrophoresis test done? The free light chain ratio would just be an adjunct test to that. Does he suspect that you have cancer, amyloidosis, or some other disorder?! Weird.

It would help if you journaled your symptoms in a succinct way.

Have you taken photos of your face before taking Mestinon and then after it kicks in? It takes about a half an hour to kick in. It wears off about 2-1/2 hours after taking it. So, you get about two good hours out of each dose! If you take photos, try to take them in the same place, with the same lighting, head tilt, etc.

Don't make changes without discussing that with a neurologist, though. More isn't necessarily better with Mestinon (too much can cause a cholinergic crisis). Sometimes changing the time between dosing is better.

If you could explain more about what symptoms you're having, that would help.

It might be useful to find a MG expert. They would know the variability of MG and the test results. Fatigable ptosis that responds to Mestinon and Tensilon (the Tensilon test) is the hallmark of MG. It also occurs in LEMS (Lambert-Eaton Myasthenic Syndrome) and some CMSs (genetic version of acetylcholine problems).

How else can we help?

I wouldn't want to be radiated and spend a bunch of money on tests just to rule things out. It seems as though you have clinical signs that would point a smart doctor in the right direction.

I hope you can find one to help you!

Annie