[Soda]

Has anyone here been diagnosed with a negative antibody test? My neuro said my test came back <.30 nmol/L so it was negative. However, I read that as long as its = or >.03 nmol/L you have a positive diagnosis. She said they didn't give her the exact reading, that it came back <.30 Not <.03! and I can see that result on my test.

Here are my symptoms: about 2 1/2 yrs ago had droopy eye, then last August had neck weakness for about a month or 2 & it came down to me holding my head up with my hand on my chin. I had to rest my neck all the time. Then that went away, then a couple months later I noticed I had jerky movements.. Then a few months later (jan 2012) body wide twitching. I'm always tired, my one leg tires easily, & I get that burn throughout my leg that I feel like I worked out! Sometimes I can't think of the right words to say or who knows. Maybe I just talk too much!! Any comments appreciated. I'm getting MRI next thurs..

[alice md]

If your question is: can you have MG with a negative antibody test (I assume you only had the AchR test), the answer is: yes.
About 20% of MG patients will not have detectable antibodies on this test.

Some will end up having another type of myasthenia: MuSK

Some will have AchR antibodies which will be detected on a more sensitive test.

Some will have antibodies which it is not yet clear if they do or do not cause myasthenia such as LRP4 or anti-ryanodine.

And some will have no detectable antibodies with all the currently available tests.

This does not mean that you have MG, it just means that it is still a viable possibility, if there is no other more reasonable explanation for your symptoms.

[Soda]

Yes, sorry that was basically my question.. I am just hoping for an answer, I'm so stressed and so afraid of something deadly that I guess I'm hoping for something that says yes! That's it, you have it. You'll live! Ugh. Thanks for your reply.. very much appreciated! Would the tensilon test show any result if I was negative for the antibodies???

[catie]

Originally Posted by Soda

Yes, sorry that was basically my question.. I am just hoping for an answer, I'm so stressed and so afraid of something deadly that I guess I'm hoping for something that says yes! That's it, you have it. You'll live! Ugh. Thanks for your reply.. very much appreciated! Would the tensilon test show any result if I was negative for the antibodies???

My antibody tests were negative. Tensilon test was considered positive. I have had a mild, but positive reponse to medication (Mestinon, prednisone, cyclosporine).

Cate

[Maiden8680]

Yes, my blood took two years to finally show it was Myasthenia. I was diagnosed with an EMG first, but then after that I got the more in depth blood test, which finally showed that I have MG.

[Soda]

Well that makes me feel better... after my MRI I will ask for EMG & maybe try the meds if it is all normal. Let's see!!