NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   Who is diagnosed with NEGATIVE antibody tests?? (https://www.neurotalk.org/myasthenia-gravis/176090-diagnosed-negative-antibody-tests.html)

Soda 09-06-2012 10:26 PM

Who is diagnosed with NEGATIVE antibody tests??
 
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 09-07-2012 03:01 AM

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 09-07-2012 12:24 PM

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 09-07-2012 12:45 PM

Quote:

Originally Posted by Soda (Post 912577)
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 09-07-2012 03:50 PM

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 09-07-2012 11:18 PM

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!!


All times are GMT -5. The time now is 01:04 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.