I am very sorry that you have had a bad experience, again.
I think you need to take some time to gain perspective. Regroup, so to speak. I have been where you are and it is not fun but getting upset will not help you, at least around doctors. Scream, throw things or dance around your house naked - whatever helps.
First of all, you need copies of all of your records. That will give you something to do so that you can feel proactive. Get both test results and notes.
Have you seen a neuro-ophthalmologist? If not, go. They can assess any fatigable weakness you might have. Ask them to explain their findings - in writing.
Have you seen a pulmonologist? They can assess if you have any breathing difficulties and why. The breathing tests should include MIP and MEP. If they find that you have breathing difficulties, make sure they also do the "walk around the clinic" with an oximeter on. Even ask for an arterial blood gas if the doctor feels you have significant breathing issues.
You need to gather what evidence there is, get more and then concisely put it all together.
I am no expert on EMG's. I don't really feel good about putting those links here because I can't give you any conclusions. Well, maybe one. Chronic fatigue syndrome is a BS conclusion for someone to make so soon. Neuros are notorious for doing that, especially if you even say ONCE that you've been tired. Seriously, do all women on the planet have CFS?!!!
The SFEMG is far more sensitive and you should absolutely have it done!!! Wear yourself out completely for it! Make sure you are warm and hydrated. Studies show that women's muscles fatigue more slowly, so give them a head start. There are MG patients who test negative on SFEMG and still have MG. It may not be MG but they need to figure out what it is, not what it's NOT.
Neurology residents often act like they have something to prove . . . that they know everything and are smarter than you. They don't know everything yet and often act like they do. Ignore them.
Do yourself a favor. Write down every single symptom you are having. Look at your body from head to toe in a mirror. Yes, do it naked or with underwear on!
There's a lot we miss because we don't LOOK. It is just muscle weakness? Do you have any pain? Any numbness or other sensory changes. Feel your muscles. Are there any areas that have less feeling?
I'm sure I've asked this but have you had your B12 checked and do you have the results?
Have you seen an endocrinologist to rule out any endocrine problems?
What I have found in my many years of doctoring H@!! is that doctors are very two-dimensional in their thinking. They gravitate to the simplest and most understood answers. They are wholly lacking in creativity and very few know the box is there, let alone know how to think outside of it.
The "train of positive waves," from what I gather, can be a completely normal finding. Small motor unit potentials, known as MUP or MUAP, can be indicative of lots of problems. That's why a thorough clinical exam is so important to diagnosing someone. Have you had a very thorough one, one that makes you so weak that you can hardly move? I've only had one and it was done by a very good neuro.
A family friend just got diagnosed with MG. She has probably had it for years. It was when she could hardly stand let alone walk and flopped back down in the chair that this perceptive neuro FINALLY ordered antibody tests and then a chest CT. The antibodies were positive. Doctors are no where near perfect. Why it takes we patients to be so persistent, while we don't feel well, for them to do their jobs well is beyond me.
Epstein Barr is not specifically related to any disease. Neither is the coxsackievirus. This is what Mayo does too. They look for these nonspecific viral infections of the past. The majority of people have had EB and other viruses. So what?
Please do NOT give up. Do not despair. I think the hardest part about this is not the time it takes or the bad "guesses" as to what is wrong but the doubt doctors have about patients and their eagerness to chalk every little symptom up to hypochondria. I frickin' hate it. It's not scientific and it's so defamatory.
Get your ducks in a row, do something nice for yourself and take time off to meditate and think. The big picture and answers may be there but they may be lost in all the frustration and the hard work you have had to do trying to get doctors to help you. I am really sorry for what you are going through. I still have PTSD from what I've been through, which is not my opinion but a clinical diagnosis.
Please let us know how things go, okay?
Annie
http://emedicine.medscape.com/article/215241-overview
http://emedicine.medscape.com/article/1832855-treatment
http://books.google.com/books?id=nAR...0waves&f=false
http://books.google.com/books?id=jp0...0waves&f=false
http://books.google.com/books?id=3cz...0waves&f=false
http://books.google.com/books?id=1sW...20muap&f=false