I didn't get to read your post, Alice, before I ended up at the ER again yesterday (3 hours after I wrote) but I think it was a combination of factors. I do trust my neuro but in this particular case, there was something he wasn't getting and I really needed another set of eyes.

Yesterday morning, I walked from the bathroom to the kitchen table and started panting for 15 minutes and tried to eat but was too winded. Left for the ER yet again but this time, I FINALLY got the help I needed.

They did an EKG (normal), chest X-ray (clear), blood and urine (fine), and ABG's showed the same hyperventilation although slightly less bad than the last one. I had stopped having any rapid breathing for about two hours before it was taken so I found that confusing but suffice it to say, I could be breathing shallow at night too. I guess it takes a long time to get the numbers as screwy as mine.

The only thing they could see as a potential issue was the d-dimer: it is not supposed to be above 230 and mine was 604 so they were concerned I might have a pulmonary embolism. I couldn't have contrast so I had to do a Q scan of some kind with radioactivity to look at the lungs which were crystal clear--thankfully. They never figured out why it is high but I guess the test is non-specific.

They also didn't know why my heart was between 90 and 135 for 9 hours the whole time I was there. But then, surprisingly, a neuro resident arrived who spent the entire afternoon trying to figure out what was going on with me. Strength awful, could not lift legs higher than 5 inches from the bed, could not get up from a squat. Bad.

I am still on 25mg tramadol from my thymectomy surgery and I cannot get off of it. Back in March, I was breathing at 30-some respirations/minute for a week due to tramadol withdrawls (see post: breathing problems...need input please). This neuro said she thought I could be having tramadol withdrawl every single day. The dose cannot last long enough to get me through to the next day and it is true that I am at my worst in the morning. She said to try a tiny bit more in the later part of the day and see what happens.

I popped a 1/4 of a tramadol (12.5mg) and came home. 2 hours later, I started feeling different. My heart rate was down to 63. My hoarseness stopped altogether. I checked my strength. I was stronger, a LOT stronger. I was able to get out of a squat with no hands. I checked my NIF and it was at -38. Unbelievable. Not only is it controlling my respiratory system, it is making my MG look like I have totally fallen apart.

I stopped the ativan since I didn't need it and it wasn't doing anything.

This morning, I feel entirely different. I have energy. I can still get out of a squat and my body feels strong after and entire week of weakness. My incentive spirometer is at 2200 from 1300. My NIF is over -40. My bp is 104/72 and pulse 65.

I am feel so blessed that someone took the time to dive into a complicated case and come up with a solution that was very much outside the box and also correct