I just don't even know where to start. My story is SUCH a long one that I haven't yet had the energy to start it on here!

I'll apologize now for the length of this post.

Basically, I've been journeying through this for 4 years. Various symptoms the first year that got me to a cardiologist etc. Finally after significant memory trouble (which I MAY now be able to attribute to what you all call 'brain fog') led me to a neurologist. He first thought I had seizures, or migraines. I WAS having seizures, but it was because of a medication I was on (Wellbutrin that I was given for what my GP thought was ADD) but after 3 EEG's and a 24 hour EEG it showed that they had stopped.
So at that point was when my, until then minor, muscle issues really became a problem. I started being unable to wash my hair because holding my arms up was impossible, I stopped being able to fold laundry, or scrub things because my arms just couldn't take it! I had been having vision problems with blurry vision in one eye at a time, swallowing problems, and then my legs started having a hard time with stamina. We had to live in a hotel for 3 months because of a flood in our home. After a very short time there, we had to move to the first floor because I couldn't get past the 7th step without major effort.
So he, at that time, sent me for an EMG. That EMG came back abnormal. The report reads "Needle EMG of some muscles showed changes of trains of positive waves" and something about "the elicited motor unit potentials were on the small side"

That led them to a muscle biopsy. At that point they were thinking Mitochondrial Myopathy, and apparently also MG (which I didn't realize until just getting the records). The muscle biopsy showed nothing, so they did a DNA test for Mito, which also showed nothing.

SO at that point, my doc was at a loss. This was now nearly 2.5 years with him. I asked him if he could send me elsewhere for another view. He sent me to UC Davis. I would have been happy, unitl I learned that that was where he did his residency. AND to make it worse, the neuro I was assigned to, worked WITH him his last year there. Everyone there knows him. I have NO issue with that as I love him and think he's a great doctor. The issue I have is that I wanted a NEW VIEW. Not a "Oh we know him, what did HE think" view.

SO, my first visit was 2 months ago. She ordered me to speech for a swallow test. (THAT was stupid because they have me swallow SOFT and LIQUID and I don't have much TROUBLE WITH THAT!!!!!!!! UGH!!!!!) And she orders bloodwork and a emg with repetitive nerve stimulation.

At teh emg there was something about decriments increasing but staying below 10%. The two doctors there were discussing it where the teaching doctor said that while 10% is considered an acceptable range, that really ANY decriment is abnormal and that I should go for a single fiber emg.

So my appointment was yesterday. This doctor in training was totally disinterested in my double vision, and started out by telling me that my emg was perfectly normal and ruled out MG. I said to her what the doctor had said and she looked down at the report and said "Oh! You're right! Okay we can do a single fiber emg." Then she carries on about how my labs came back and they did do the Musk antibody which was normal, but that the other labs showed I had been at some point exposed to the Epstien Barr virus and some coxsackie thing, and that she was considering Chronic Fatigue Syndrome. I told her that I had trouble with that as I did not feel that a) I fit into the description OF CFS and that b) my fatigue isn't my primary complaint, but that it's SECONDARY to my BODY percieving MINOR activities as extreme!!!!!!!

OMG I'm SOOOOOOOOOOOOOOOOOOOOO freaking frustrated!! I am giving up totally. I'll to the single fiber emg, but after that, I'm SO freaking done. I've had it. Blind **** doctors to things that I'm TELLING THEM that only want to move forward with the things that they are SO focused on in their own minds. Unable to see outside the scope of ANYTHING.

I'm sad, disheartened, and discouraged. I'm tired of being this way, and of seeking out help and not getting any. I guess I'm destined to suffer with this forever with no relief......