I had serious memory issues when all this started. My husband would walk into the room and it would frighten me to death because I had no memory of him walking in. To me, he magically appeared in front of me. I was told that it was some type of dissociation disorder (AKA crazy as the outhouse rat).

I also was making bad decisions that could have cost me my marriage, my job, and my financial stability in general. My husband caught the financial errors and fixed them.

Yet in all that, I never missed work. I had outstanding work reviews. (I am suspicious that my supervisor is so nice that she gives everybody perfect reviews so that she doesn't hurt our feelings.)

Now my memory is MUCH better. I am not misplacing moments in time. In fact, I have learned a bunch of new complex guitar chords that I could never play before. I also wrote an original lab for my class, sent a link to it to a major textbook publisher, and they may include it in a text book.

My muscle weakness has gotten worse. I am off of work today. I just spent some time outside taking care of the horses and I was gasping for breath when I got inside. Dang it.

So sorry, Celeste :(.......

Do you know reading your posts inspired me to ride a horse for the first time ever.... :heartthrob:

My doctor just kind of gave up on my case and couldn´t give me the MG diagnosis he really wanted to because of the negative SFEMG -
So that must mean I am ´healthy´.......
Well at least most certainly -´eligible´.....:wink:

They were looking for someone from our group for this brain scan and so I just went ahead and volunteered myself for it :yahoo:

If it gives you some hope, the person who sent me an abstract from a conference describing a few patients with MuSK antibodies and normal SFEMG, was no other than the same neurologist who told me a few years earlier that it is impossible to have MG with a normal SFEMG.

In fact, I believe our discussions eventually led to both of us having a better understanding of this disease. :)

That is really quite something :Clever:....

I suppose I should give my doctor some credit since I managed to convince him to keep on prescribing me the Mestinon.
He did also think that the SFEMG practitioner was referring me directly to an MG specialist at the hospital because
´It was quite possible she could have made some errors with the SFEMG test´.........

Yes....well.....hmmmmm.....that could mean a lot of different things!

This neurologist (which I nicknamed at some point-SFEMG neuro.) is one of the best EMGist. So, when he failed to demonstrate my NMJ transmission deficit, there was no one else he could send me to. :(

In fact I did have a very diagnostic SFEMG by someone else, but I didn't trust those results. I much more trusted his. ( I always wanted to know the truth not have some artifact test result) .

Clinically, he was sure I had MG and even treated me for it. But, he never felt comfortable about this diagnosis and constantly questioned it because of my relatively unusual clinical course (and response to treatment), negative antibodies (my MUSK antibodies were found later) and repeatedly normal EMGs.

He made every possible effort (including coming late in the evening) to obtain a diagnostic EMG. He even did an RNS of my diaphragm (as my most prominent symptoms were respiratory). I can understand that it was very hard for him to accept the fact that this test he was so proud of being so skilled in (and no doubt that he is) was not as infallible as he was made to think.

I do give him a lot of credit for being ready to discuss it. (we had numerous e-mails in which I patiently made my point and he made his and like I said I think we both learned from it. I definitely did).

I also give him a lot of credit for sending me that abstract, which showed that possibly I was correct. (even though he is an MG expert and I am just a patient).

I forgive him for deciding at some point that there is nothing more he can do for me and letting me deal on my own with severe respiratory difficulties while telling my pulmonologists (who fortunately seriously questioned it) that there is nothing physically wrong with me.

Can you say more about what you mean by this?

When my SFEMG practitioner had to refer to the manual during deltoid RNS I was a little surprised - but yet I did trust the results of her SFEMG by all the other signals that were given off during our 4 hours together.

Everyone has to perform their first SFEMG and it shouldn´t be impossible to get it right! (I think she had done a number of them)

About "brain issues" in MG:

http://www.ncbi.nlm.nih.gov/pubmed/11166079

Note that the first line says, "Most individuals with myasthenia gravis (MG) complain of cognitive impairment........."

I definitely notice a difference in my ability to think and remember.............even when I'm NOT on Topamax for migraines. ;) When ALSO on Topamax, I'm dumber than dirt. :(

Just in case you are wondering, I'm currently a certified idiot.

Fortunately, I only have cognitive impairment when my breathing problems are out of control (my brain seems to be unhappy with increased CO2 levels and also with inadequate sleep).

Most of the time (with respiratory support if required) my cognition seems to be fine. ( I wouldn't take responsibility for the life and well-being of other people if it weren't so).

what I mean by this is that this is a very operator dependent test. you can very easily get wrong results (either positive or negative) if you don't do it correctly/ don't interpret it correctly.

I found it unreasonable that after my neurologist tested me numerous times and always got no jitter, this person (who I could see was less proficient) got impressive numbers in every muscle she tested.

At some point I thought that maybe my NMJ is sensitive to pain. (he did it in a very gentle way, which was at the most slightly uncomfortable and she did it quite the opposite). But, this didn't make much sense either.

I eventually showed it to an EMGist in a large MG center and he just nodded his head. My neurologist said to me about her (in his very gentle way)-well, I think she is a very good and nice person, but I think it is better than people don't do what they don't know much about. (translated to less gentle language-her results are crap).

Too cool! So did you have fun?