Erin, thank you for your kind thoughts. I wished I lived near Texas and could see your neurologist. I could really, really, really use one that listens. I live in Portland and it seems like no doctors listen here. It seems to be the culture. They throw some antidepressants at you (but I'm not depressed!) or toss you into a garbage diagnosis without even trying. And I think you're absolutly right about men being taken seriously and women being treated liked nuts. Like everyone I'd been fairly accomplished and balanced and used to being treated with respect until I got sick. I was in such shock the first few times when I was dismissed and treated like I was hysterical or making things up. I didn't even know how to respond. I still haven't figured it out.

Anyway, I'm sorry that you weren't listened to either. I'm sorry you got pushed right up to the edge before they would help you. It's just not right to put you through that!

Annie, you nailed it when you said that once a Mayo doc nixes the diagnosis than you're basically not going to get a doctor to override that. I've been feeling like I've been blacklisted. Between that and the diagnosis of fibromyalgia from my primary doc which I don't have any symptoms of and which is treated like a scarlett letter around here. Probably a big, giant W for waste of time.

The whole thing started off kilter because I went to the Mayo (borrowed the money to get there, so this was a huge sacrifice) and in my mind I had dreams of them really digging, digging, digging for a diagnosis. I also chose Mayo because I felt that I had so many symptoms of mg and they are supposed to be good at SFEMG. But the first day they told me to go home and come back when I was at my worst, which is not a possibility because I can't crawl on a plane and fly halfway across the country at that point, plus it's not at all predicatable how I'll feel. Anyway, I spent several days asking to be tested for mg and given a SFEMG. They finally agreed to test my blood but they gave me a regular EMG. This is where it all starts off wrong. The mayo doc was a kind, older gentleman but I couldn't convince him that the SFEMG was the best test. He also thought that because the titers were low that was indicative that I didn't really have the disease. He just wasn't very knowledgeable about MG. But because of that the snowball started.

Your point about having a doc look at me without the mayo notes is a very good point. Most doctors here require an official referral so both neuros have seen all the notes. I did speak with an MGF leader in the neighboring state to confirm that I wasn't crazy and that the titer level is meaningless and she halfheartedly recommended a doctor at the University of Washington who I have an appt with in two weeks and I don't have to send the records. I'm hoping for the best, but apparently there's nobody fabulous up her in the NW. My other opportunity is that I sent an email to a leading researcher on the east coast to confirm my understanding of the facts because I was beginning to think I was crazy and he recommended a doc in California who was a specialist. The Cal doc needs a referral though! Aaaarrrrgh!

I guess I'll just keep trying until I find someone who listens. What else can I do? I'm on the fast track to financial disaster and I'm tired, so very tired, of the suffering and the exhaustion.

Of course it's possible that I'm wrong and I don't have mg. I would just like to find someone who will keep looking for what's wrong and explain why I have these symptoms but not mg.


Thanks again to both of you for your good thoughts. I really appreciate you taking time to help me!!!!