Annie, I'm not giving up just because the doctors are cavalier about the lab test results. I AM taking it as a sign, however, that I need to find better doctors. I'm collecting medical reports with each doctor's visit to try & keep empowered. Next doctor I see, I'll switch to 'demanding' rather than 'asking' for more tests. I've tried backing off being aggressive since that garnered a negative response when this MG journey started. I've planned on seeing a cardiologist (I had an abnormal ecg from the most recent E.R. visit) and thought about seeing a rheumatologist. In fact, the endo suggested it when I asked for assistance monitoring the Polyglandular Autoimmune Syndrome. I'll push forward my search for a rheumy. (So many genres of doctor... I can't even count the number of doctors I've seen in the last three months.)

I definitely keep ALS in mind when searching for a diagnosis. And I realize defining with diagnosis won't necessarily grant treatment options. I've also read ALS can respond to mestinon & tensilon. There's been such a dramatic fluctuation in symptoms, though, so I'm less concerned about ALS than other neuromuscular and autoimmune disorders. But I haven't forgotten it and will accept it if that's what this is.

To my knowledge, my mom did not have genetic testing. There've been no other known cases of ALS in the family, but autoimmune disorders are rampant. I'm working with the assumption (unproven as of yet) that there's a mutation in HLA tissue type DR3 or B8 which led to our scattering of autoimmune disorders (including her ALS and my whatever this is). I do plan on getting genetic testing, presently on the backburner since I'm seeing what feels like a gazillion doctors these days.

I will not dismiss my symptoms as being caused by anxiety. Panic attacks,.. nah, there's no frigging way. I get the feeling this talk about anxiety is because of my voice. I am SO. OVER. this being put down as anxiety. Here's the scenario one more time so we can maybe let this go. If discussion continues on this subject, I'll try to keep open ears, but I'll say point blank I'm starting to feel hostile on the topic. Anyway, the scenario:

I wake up, my voice is normal-ish. Within a couple minutes of speaking, my voice starts to rise & become wispy. My throat aches & feels tight the longer I speak, and becomes more soprano & wispier with sustained talking. Ways in which I can make my voice return to normal: tilting my head down to my chest while talking, tilting my head up to the sky while talking, burping, sneezing, coughing, putting food in my mouth, drinking, eating, swallowing, and being on oxygen. With each of these scenarios, the return to a normal voice lasts a few seconds.

My theories as to why my throat is so heavily affected: one theory is because my job (for 10 years) involves an inordinate amount of talking all day every day. Also, I had decompression therapy on my neck for five weeks this summer. Five days a week, my neck was stretched and I wore a soft cervical collar for the duration. I continued to sleep with the loosened cervical collar for months after to provide additional support keeping the neck vertebrae from subluxating during the night. (The treatment was very successful, by the way, the 13 years of chronic neck pain is gone.)

Today I took a TimeSpan Mestinon. Periodically throughout the day, my voice returned to near normal for 10-15 minutes at a time. My voice hasn't been normal since before going off the TimeSpan at the end of January. (During the interim, I had tried the generic in 30 mg increments for a few days and it didn't help my voice at all, so I assumed my voice wasn't improved by meds. I now conclude I was wrong.) The TimeSpan wore off a couple hours ago and I can feel the difference.

"Psychiatry and neurology need a divorce." Let's put it into practice.

Anyway, thanks for your support and all the information. It's very helpful and definitely helps me feel more prepared for the doctors visits.

Bny, the doctor works out of Baylor named Dr Yadollah Harati. I've heard from 3-4 people who say he's pugnacious and highly specialized, and will keep at it until there's some sort of diagnosis. So far, I've spoken with his office staff (a woman named Claire) and I thought she was wonderful. She told me a new patient appointment only takes like two weeks to schedule (!!!) I'll probably test the water with him within the next month.