Yes, it's totally possible to have negative bloodwork and have MG. Our tests typically look only at ACHR and MUSK, and there are several other known antibodies that cause MG (but there aren't commercial tests available for some of the others).

One thing your neuro might do is an EMG (not the most pleasant thing in the world, but...useful), which involves some electrical currents.

I too had negative blood work at first, but my antibodies--ACHR in my case--have showed up over time, oddly enough.

Hi!
I am a completely neg. blood work MG'er - or Seronegative. I started having double vision about 7 yrs ago but I dismissed it to being in grad school. Then came overall muscle issues about 5 years ago, but bc of being a fluffy gal, my dr said that is why and kept dismissing it. I kept trying to keep going but it was getting worse .
Well, I know my body and I knew that despite being a big girl my entire life, I was still active and able to climb, have fun and do thing I wanted. This was quickly coming to an end.
Finally my new eye dr was concerned on me discussing the double vision and started doing some research - he is the one who came up with the initial dx. The first neurologist I saw did all the blood work which came up neg so he dismissed me but sent me to a fellow neuro friend of his bc of my symptoms were so mg'y. This neuro did a rapid muscle test (I believe that was the name if it)- that showed an issue.
So she sent me to another dr who only looked at blood tests and said no. I was beyond frustrated.
I went back to the second neuro who was now my primary neuro due to other need I have, and she sent me to a large hospital. This was a wonderful visit. It was an objective visit where the neuro looked at blood test did sfemg's, very complete exam, and history. I was there all day long.
This dr. Did dx me with seronegative mg. we are not the textbook cases but we are real! It can be a frustrating journey but you have to educate yourself now as much as possible so you can help educate your Dr's -
I just recently moved and was so nervous about my new neuro and whether he would regonize/ respect really the seronegative dx and he said it before me after reading my records and gave me this long educated speech about how hard it is to dx us! Score!
Best of luck to you and hang in there - keep in touch and don't give up!

I am seronegative except for the SFEMG that showed border line abnormalities. Before that, my neuro dx me clinically. I was on treatment for several months before the SFEMG. Please be careful and if you get worse, let your neuro know. With the summer heat, some of us have worsening symptoms. You might ask for a trial of mestinon, if you aren't already taking it. However, mestinon only treats the symptoms, not the disease; please pursue treatment. Good luck.

Thanks so much for you help and responses everyone!

Seattle: That's so interesting that you were negative and have now turned positive! It's so crazy how the body works sometimes. Is the EMG what they consider the Jolly (or I think they also called it RNS or something) test? What all did your test entail? Thanks!

Essential: I'm so glad to hear you found Neuro who is willing to help. I have went though this before with another condition (a rare cystic tumor in my brain that surgeons wouldn't touch because they "didn't know much about it" and said it wouldn't be worth the risk. I've since needed surgery to remove it and thankfully it's done!) but it was so hard to find doctors who would just listen. Hopefully this doctor is someone who will!

Barbel: I haven't het been put on a trial of Mestinon and my Neuro hasn't suggested it yet. But I do see him on Tuesday so maybe we will see what he says! May I ask what kind of symptoms you were having to get the clinical diagnosis?

It's such a weird feeling when my muscles get that "tired" feeling. Tonight while washing my hair, my arm just started feeling like I was lifting weights even if I'm only holding them up for a minute. Even noticing things such as bending down to pick something up and my legs will feel super weak. I've experienced several things like this recently and it just concerns me. I don't know whether this is just due to me gaining some weight and being inactive (I'm not really overweight and am only 25) but it just doesn't make much sense! From what I've read, it seems like the things I've been experiencing DO sound like MG.

Thanks for your advice guys!!

Surrender,

To answer your question. I was having extreme muscle weakness in my arms, legs, neck, face, tongue, eyes and core. I felt ill (general weakness), and I had extreme fatigue. My neuro did an EMG, and another test (I am not good with medical details) and the regular blood tests.

Barbel

Sorry to hear you are having problems. They do sound like MG.
Have you tried Mestinon (pyridostigmine)? If it works it helps confirm MG as it have few other uses. For some folks with MG it doesn't work, so it doesn't rule out MG.

Hope you find out what is wrong and get the right treatment.

Good Luck

My story is somewhat similar to yours only my weakness progressed to respiratory weakness quickly. My labs were low positive (story of my life) and EMG was positive. Mestinon works for me. Just take it easy until the testing is done, but Mestinon should be used.

I am a new member to this site, but my symptoms and experience has been very similar to yours. I have had mild symptoms for many years. But Neurologists kept saying there was nothing wrong with me. Then after getting pneumonia and being put on Avelox and Cipro, I developed all the symptoms you described, plus had difficulty breathing. Saw a neuro who thought I had MS or Mg, but all tests were negative, including emg. Because I was getting worse, he started me on Mestinon at first twice a day, then three times day.
Then had a SFEMG...which was inconclusive! Arm was positive but forehead was negative. So I still have no definitive diagnosis. Just a "presumptive" diagnosis based on the fact that Mestinon helps and I have most if not all symptoms if MG. My neuro said I probably have a variant form of MG for which there is no test yet.

I attend monthly MG support group meetings and many have similar stories. I am not familiar with a JOLLY test.

But, just know you are not alone. It is important to be your own advocate and be sure all your docs take your diagnosis seriously. If they don't, then find new ones.