You need a new Neuro.

Just - like I did.
It took me 3 different Neuros - before I was directed to one - who was truly experienced with MG.

8 years ago, I was told exactly the same thing - by a local Neuro, who was an ''EMG expert''.
Despite the fact that I tested off the charts - for the AChR Antibodies (sero-positive).

Any Neuro - who tells you - that you do not have MG - when you test positive for AChR Antibodies? Akk. Frustrating and STONE-AGE as hell.

Yes - with a ''seropositive'' blood-test: there can be false positives.
But this happens - only in a small amount of cases.
Not EVERY time.

Do you take Mestinon?
If you do take Mestinon? How does it affect your symptoms?

Effective use of Mestinon - against MG-like symptoms?
Is considered almost diagnostic of MG - by itself.
Even without any other testing - of any kind.

Hope you feel better!
Very frustrated for you - Ross

Like Ross I'm sero-positive. I was 15 when diagnosed & that was with a tensilon test. Up till a year & half ago I had been in remission for over 25 years. I was rear ended by some one & had a EMG done for a back injury. The results were abnormal. In that time MG symtoms started showing up so I had my family doctor run a AChR test, came back elevated, she ran again in a month it was even higher. So the doctors I was seeing for car accident I asked is the EMG abnormal for MG or car accident - they could answer that question. The neuro I saw before remission no longer does MG, so a local neuro I saw who has other MG patients, asked him. His opinion on EMG is they are up to interpitation, but my AChR test was 1000 times higher than normal.
I have only seen him 2 times and I haven't decided if I trust his knowledge in MG. My point is he did say there is no question I have MG from the AChR test. I would trust that test result over the EMG.
It could be that this doctor is using you has a Guinea pig for her knowledge. I experienced this at UC Davis when having my daughter. My husband & I finally said no more. Question her reason for this.

This is just another example of why I have no faith in these so called "objective" tests. Also, there is no normal amount of those antibodies. They do not belong in the human body! Dealing with MG is preposterous and ironically itself tiring.

I'm sero-positive but negative on the EMG. Despite extremely debilitating weakness to the point I'm in a wheelchair, they were very reluctant to diagnose me with MG even though I had an extremely high antibody count. It made no sense to me and it took the top expert in Scotland to decide whether or not I had MG. They initially put me on a dose of 15mg Mestinon every 4 hours and because I didn't respond, this made them even more unwilling to diagnose MG. It's only since I've been on 90mg every 4 hours that I've noticed a, albeit not very large, difference.

I agree with Ross. You need a new Neuro.

Take care.
Lynne

I had a "negative" SFEMG, and I'm also seronegative for both ACHR & MUSK antibodies, but my neuro is convinced I have MG. He uses many other pieces of information to complete the "puzzle", as I would hope all neuros do - sorry that yours is being so difficult. For me, I had a 2.5 year history of significant weakness (not being able to stand up, crawling to get to different rooms, not being able to hold up hair dryer, not being able to sit at a desk for more than a couple of hours before falling over, etc). In my clinical exams with non-MG specialists, I had abnormal muscle weakness. In my clinical exam with my neuro/MG specialist, I couldn't push back on any of my limbs after exertion; the first time he examined me, he was positive I had MG, even without a blood test. I also had a hyperplastic thymus (on MRI & CT scan, which were luckily ordered before blood tests results were back), and had a thymectomy, after which I have experienced improvement. Finally, mestinon does help me - though it is not a magic pill like it is for some others. Plenty of evidence of MG, enough to convince one of the top specialists in my area, even without SFEMG or positive blood tests.

By "negative" SFEMG, I mean that I only had one abnormal jitter pair out of twenty; you need two in order to be considered to have MG (see link at end). Mine was done first thing in the morning, after I had coffee (whoops), had been on a high dose of prednisone for 1.5 wks (& mestinon, but skipped that morning), and it was on only one location - one that usually does not have muscle weakness for me (but that is the only one the doctor had trained on). Also, the doctor left partway through to do an interview with a journalist, then came back. Then when he finished, told me I "definitely do not have myasthenia". Suffice it to say, when I told my neuro this, he was very frustrated at the doctor and said to ignore him. I hope you can find a neuro like that, who uses all available information, not just one or two pieces of data. Don't let them tell you a negative SFEMG is enough to rule it out, if other evidence points to MG.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108086/

I'm seropositive and had a negative SFEMG but due to a strong clinical workup, positive results on mestinon and the positive antibodies my neuro didn't care my SFEMG was negative. I also learned on this board, after I did the test, that I shouldn't have had coffee right before which I did. The neuromuscular dr didnt mention one thing to me before the appointment about not taking any mestinon before the test (I didn't on my own doing) or no other stimulants etc. Also I was cold during the appt and she only tested one spot which didn't have much weakness at the time. The neuromuscular dr who did the test looked at me at the end after going over the results of the test and said "these results show the problem isn't in your NMJ" I asked my regular neuro about that and he said what a lot of other people on here have stated, that the test is not conclusive and there are too many variables. The fact that I respond so well to mestinon was proof enough for me, but I really don't get these dr's who, even when you have a positive antibody test, still don't want to treat. It is so frustrating to me. Good luck with your journey, I would get a different neuro if possible. Also I remember you once talking about getting a burning feeling in your face, I too have had this for a few years now. My neuro blames it on my fibro. I'm not sure but I do know when I went on Sevella for fibro it calmed down a lot (I get burning in other areas too and it helped with all of it) anyway, good luck with everything. =)
Maryanne