Originally Posted by bluesky

Hi Everyone,

I've been following and enjoying your posts for a while but have never posted myself. I suppose I was hoping to get a definite diagnosis myself first but it's not turning out to be easy to do that at all.

Please, I would like your advice. Your help! I'm trying to keep going but it's discouraging! To make a long story short I have been sick for almost eight years. I came across myasthenia gravis on the internet and it was finally a disease that I felt really fit my problems. I ended up getting tested at the Mayo. I tested positive for the Achr antibodies, but nothing much showed up in the EMG or nerve thingy (sorry! forget what it's really called). I asked several times for a SF EMG but it was the neuro's opinion that that wasn't the best test for mg (I know it is now). Anyway, because the AchR titers were low the neuro didn't think I had mg. Funny thing is, everything I've read since then leads me to believe that the titer level doesn't matter. I checked that with a MGF person because, really, I was beginning to think I was crazy.

Okay, here's the thing: I've been to two neurologists since then and neither of them seeemed to think I have mg. The neurologist I saw today wasn't at all impressed with my clinical exam. So I guess here's my question for all you wise people: I have a lot of the symptoms (I believe) like a drooping eye, sometimes my tongue gets very weak and I talk funny, I really, really struggle to breathe especially at night or when I'm worn out and I can't lie flat even to sleep, and my arms shake and tremble with very little exertion. But - all of this comes and goes. I've never walked into a neurologist's office having everything happen at once. I'll tremble and shake and I'm told it's anxiety or essential tremor. My eye will droop and I'll be told that it's not that bad (it seems really bad to me!) or that it's just because one eyebrow is lower than the other (which it is, but still, my eye is drooping). The breathing problems I've never had documented.

So I guess what I'm wondering is: do people with myasthenia gravis look terribly weak all the time? Is it the type of thing where you just walk into a neurologist's office and they know that you're sick? The neurologists always do the "don't let me push this limb down" test and I always pass with flying colors. It just takes time for the weakness to appear. And how badly I'll react changes from day to day and hour to hour.

I'm feeling a little hopeless about ever getting a diagnosis unless I can get a neurologist to stay with me 24/7 for a week. Or am I just clinging to the hope of a diagnosis and I'm not seeing this disease for what it is? I was trying to tell the neurologist today that I feel like I am suffocating a lot. I feel like my organs are too heavy for my lungs to push out. He really couldn't have cared less. Ugh. He finally sent me over to get a spirometry done but it was 9 in the morning and I had taken mestinon and I could feel that I could inflate my lungs at that point, so I'm sure the spirometry looked normal.

Okay, just one more question: probably my biggest problem is a horrible, deep, completely debilitating fatigue which has made it almost impossible to function much at all. Does anybody else have that?

Oops, this is turning out longer than I meant it to be. I guess I'm just trying to hold it together and feeling very discouraged. Does anybody have any thoughts or advice? Heeeelllpp!!