Linda I would say yes, it can and should result in just that. The goal of the treatment with Imuran or cellcept is to suppress the immune response causing the symtoms of MG. If the Imuran is doing its job, it should reverse the symptoms and clinical test results that measure the levels of disease activity.

Actually Linda I would consider your test results very good news!! We all should be hoping to achieve negative results on a MG test....the medication you are taking is working. Hopefully you have felt somewhat better since starting the Imuran treatment. Like you I take Imuran for MG and also Crohns and colitis. I'm glad I was able to start Imuran long before MG became an issue for me.

Thanks for the update. I also hope you are feeling better!!

Joe

That would be good news if she were not having symptoms. When will neuro's learn that where MG is concerned the most valid data is in the symptoms of the patients?

Thank you Joe and Elinora!

Well, as Elinora said, it's great news other than the fact that I am symptomatic, and have been on long term disability for over a year, after coming out of a 15 year remission.

Apparently, I am not symptomatic enough for the neuros, or wasn't on the particular day that I saw them, which in turn will affect my work status, and disability. :(

Unfortunately, because of where I live, it was approximately 8 - 10 months before seeing my neuro, so I was already on Imuran for quite some time by the time he saw me, then it was over a year from the start of Imuran by the time the SFEMG was done. Also on a "good" day! Never fails, travel 900 kilometres to see a specialist, and your gonna have a good day! :)

It made sense to me that the Imuran would cause a negative result, but just wanted to see if anyone had any info that would back that.

Thanks again!

Good point Elinor and Linda, if your still sympotamatic your not getting enough control over the MG with the imuran. Linda are still testing positive to the MG related antibodies?

Joe

There is no association between level of antibodies and severity of disease. A seronegative patient can go into crisis. Why do they use tests known to be insufficient to exclude MG to measure MG?

Yes, still positive for the antibodies. Not as high as when first diagnosed 20 years ago, but as Elinora said, antibody levels don't always coincide with severity levels.

I don't understand why your docs would question your diagnosis. You have remained AChR positive, have had symptoms, been symptom free and now are out of remission. They should be questioning the validity of the EMG.

When I tested AChR positive, (also thymoma), I was still scheduled for EMG. I asked why she said well, I guess you don't. So I didn't get one. I didn't want any unnecessary testing muddling the picture.

-sherry

It is all so inane and absurd. On top of having a crappy disease we constantly deal with perfectly intelligent professionals who throw away all sense of reason when it comes to treating MG.

Linda, I am seronegative, diagnosed by Boston MG guru on the spot after unequivocally abnormal Stimulated SFEMG last October. I was on Imuran 5 months before it was discovered by my new Neuro that my white blood count had plummeted dangerously and that I had the genetic marker that causes potential toxicity with Imuran. A month or so later, I was given a Volitional SFEMG by a neurology fellow that came out normal... and I was told on that basis I am either in full remission or never had MG to begin with, and my symptoms have some other cause. So, I am right there with you!!! I will write more tomorrow about what I believe happened. Holding you up! XOXO Rosie

Rosie is our princess of patience!

This is the problem with changing diagnosis: "Myasthenia crisis may be caused by a lack of MG medication"
http://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/myasthenia_gravis_85,P07785/

The Neurologist need to err on the side of caution or they are creating an un-acceptable risk.

Sending support and Hugs through all of this~Marina

Thanks everyone, you all ROCK!

I guess the issue for me is that I am still having symptoms, albeit not quite as severe as they were a year ago, the neuros obviously agree that I have MG, and still say to keep taking the Imuran, but because the emg/sfemg were negative, they don't think the symptoms are MG related. It really makes no sense to me.

My most bothersome symptoms are breathing - not always short of breath, but the typical heaviness on the chest everyday, I wake up knowing that I was not breathing adequately during the night as I can feel that there is something that needs to be "coughed up". My neck gets weak usually by the afternoon, and swallowing is sometimes an issue. My arms and legs obviously get weak as well, but as we all know, this is generally after repeated activity. I can walk for 20 minutes or so, and be relatively ok, but it is the aftermath that gets me. So I guess I just don't get how being able to do a few squats in their office tells them all is fine?

This is such a frustrating disease! Thank you for letting me vent!

Wouldn't it be nice if we could let them "test drive" our bodies for a few days? :)

I agree. Imagine what they'd do if they had to live in our bodies!