Hello all just wondering if anyone else has had their anybodies come negative when they were first test and then the last two times they have been positive?? Think its weird and a little confusing, but good news is that my dr and I are now moving forward towards thymectomy in hopes to give me some relief. Now that I am on disability, i'm just trying to rest and get healthy so I can get back to my somewhat "normal" life.

Hi
I have been working on my MG for about 2 months and have learned each case is different. Yesterday I finally got a "expert" to say for sure I have MG. All my tests have been negative but that's not unusual. One doctor who was pretty sure I had MG said my blood work would likely turn positive in one to two years. My mother was found to have MG after several years of doctors and tests and the same with two of her sisters. I ended up at the ALS Center who handle a lot of MG patients. Most doctors and Neuro's just don't know enough about MG. As for removing the Thymus, I am going to try the meds first and save that as last resort measure I think. Right now my Mg is just affecting my eyes and a little bit in my legs.
Good Luck,
Mike

My doctor tested my antibodies a second time, saying he had a patient who came back negative and then strongly positive. Mike, I never heard anyone say that the antibodies would come back positive a year or two after the onset of symptoms! That gives me hope that I can eventually get a diagnosis. Maybe mine came back negative just because I was tested so early. Thanks to all of you for everything I've learned here,

Abby

Couple of weeks ago at my neuro check up, they wanted to retest for antibodies. Said that lots of times sero neg patients will test positive for antibodies one ot two years after dx. I didn't see the point and declined test since I'm doing well on Mestinon alone.

Sue

Newbie87, Yes, antibodies can take a while to show up in blood tests. No, they don't know "why."

In 2000, my modulating antibody was 18%, below normal (0-19 range). In 2002, it was 23%, above normal.

Mestinon has been shown (in one study only) to suppress the humoral immune system that produces antibodies, so having a blood test while on it "may" effect the results.

Antibodies can circulate in the blood or be "tissue bound." I mean, they go and attack tissues for a living. I have not read any good articles on why some circulate and why some stay in the area they are attacking. I'm sure there is something out there on that. So if they are not circulating, they wouldn't show up in the blood.

I hope a thymectomy works for you. It may or may not. I wish my life were "normal" too.

Annie

Wow. I must have really bad luck. How did you guys even get your doctors to re-test your for the antibodies? My AchR antibodies are negative. I've only had this one antibody test. But apparently it is sufficient enough for my doctors to say that MG for me is "highly unlikely".

The frustrating thing is that I don't think that MG is an autoimmune disease! Antibodies that are responsible for autoimmune diseases fluctuate all the time! This is in part what makes autoimmune diseases so difficult to diagnose. It's also in part why the symptoms fluctuate. I've heard of people being tested for things like Lupus who will have a positive antibody test and then a month later a negative test, then it will be positive a few months later.

I know that doing the antibody tests are important, but considering that their levels fluctuate all the time, they should only be used to confirm a diagnosis not to rule out a diagnosis. Unfortunately, I'm not sure why, doctors don't seem to understand this and do in fact use negative antibody tests to rule out a diagnosis and will refuse to re-test.

This doesn't make any sense.

Lindie, I think you were kidding when you said you thought MG wasn't an autoimmune disease. It most definitely is, unfortunately. Did they do the entire MG antibody panel (binding, modulating and blocking) and the MuSK antibody? Do you have your results? If not, get them.

There are other acetylcholine diseases that are not autoimmune called congenital myasthenic syndromes. They are caused by genetic mutations. Some people have adult-onset forms of them, even though the word congenital is used (because the gene is present since birth).

Most good doctors will indeed use a positive antibody only as confirmation not a negative result as an exclusion. Rheumatologists look at 11 criteria, among other tests like C3, to evaluate and diagnose lupus. Lupus, not unlike some MS patients, can occur in "flares," as do the antibodies.

You need a better doctor, which is your right to pursue. Second opinions are often necessary; "blind" ones too where they don't know you have seen someone else. Prejudice travels faster than a test result and most doctors will not disagree with an "expert" who says you are fine.

I've known patients who have been told they have MG, given Pred and Mestinon, then have their antibodies tested and given a SFEMG, which would obviously be negative, told they don't have MG and then have gone off of their meds and had the tests be positive! The way they diagnose MG sometimes is indeed utterly stupid.

Hang in there, Lindie, and get a better doctor. And if you don't have MG, they need to figure out what you do have!!!

Annie