Hey everyone,

I hope you don't mind but I need to vent all of this out of my head - it's been swirling around all night. I just need to tell this to people who can maybe understand.

After my initial diagnosis I've been having a lot of trouble with my neurologist, I'll call him Dr. X. I was supposed to have tests done (pulmonary and emg) towards the end of November and then see him a week later. I was getting sicker and sicker and three times I got a call from his office cancelling the follow up appt and pushing it back to Dec. 24. I got a final call cancelling that appt but they managed to get me in on the 15th. So my SIL told me when you're down there for tests just show up at his office so they can see how sick you are. On the day of the tests I was half dead, out of breath, face falling down when I arrived at his office. I told them I was really sick and that I wanted stronger meds. I got a call back, not from Dr. X but one of his staff saying that he couldn't see me any time before the next scheduled appt but he'd call me back within the hour with the results of the tests (I never had heard back on the original blood tests either). I never heard from him again and as the weeks went by I was too sick to do much about it.

Finally, last week I went in to see a pulmologist locally and showed him the data from the pulm test. The spirometry was normal (it always is) but the mip/mep were 50% and 25%. He said that was typical of mg and also the difficulty breathing when I am reclining and lying down (I no longer do either without a ventilator) was typical. The next day I get a call from Dr. X's office: my pcp had called him wanting to talk about some pulmonary tests. Where had I gotten them done? Duhhh!!!!!! Dr. X had ordered them himself. A couple of days later I went into the PCP. She told me she had talked to Dr. X and while he diagnosed me with mg he wouldn't treat me because he did not feel the trouble breathing or the facial weakness were symptoms. He said the pulm tests were normal. I'm sorry to say I cried. I felt so hopeless. I told her what the pulm up here said. So she called him again and came back and said he wanted to run a SFEMG and he was going to try to arrange it for my next appt the following Tuesday. He'd call me for sure tomorrow.

I never heard from him. In desperation, hoping to talk to him I flew down for the appointment. Stupidly alone. After the traveling I was an absolute wreck. Even after waiting 2 hours past the appt time just walking into his office I couldn't breathe. We talked (me panting and trying to breathe) about the pulmonary tests. He said they were normal, I said what about the mip/mep to which he replied that it doesn't mean anything because people just don't try hard enough. I said I tried as hard as I could, that it almost killed me. I told him this was getting very dangerous and I wanted immunosuppresants. He insisted something else was wrong and wanted to admit me to the hospital. I said I couldn't afford that, my insurance company was going to try to say the hospital was overcharging and would only pay 50% since it was out of state. At that point he got irritated and asked me why I do that? I was so confused. I asked him what he meant and he said basically, if you can't afford health care than you should stop trying to get it, just go home and try to survive. Wow. Anyway he made it seem like it was impossible to help me unless I agreed to being admitted. So I gave in.

I'll try to make this short. They got me a bipap so I was able to breathe. Used that all night. The next morning went in for the SFEMG, which was excrutiating! Now keep in mind that I don't have ptosis, I have a severe eyebrow droop and sometimes my mouth will droop on the right side too. He tried to test the muscles that lift the eyebrow but couldn't get good data. Then he went down and inserted two needles, one at the rt corner of my eye and one down from my cheek bone. I asked why they were testing there since my eyebrow was week. They said that they were testing the muscles that open and close the eye bc they were better researched. But I don't have any ptosis whatsoever. At any rate, the test came back negative. I said to the neurophysiologist that it seemed logical to me that since I clearly have a severe problem with facial weakness that the nerve and muscle tests haven't picked up then either the tests didn't work or I need another kind of test. He told me to see a plastic surgeon.

Time went on (dollar signs adding up!). I had a ct scan, an echocardiogram. Another full day of resting and I was looking good. That afternoon they came in and tried twice to give me an arterial blood gas. It didn't work and the nurse came in and we decided it was silly at this point to get one. I was no longer out of breath. So he called some doctor who said yes, we need it. At 10 that night, after a full 30 hours after being admitted and now fully rested they got the abg. I'm assuming it came back normal. The next day, by now two days after being admitted, and resting on the bipap, they gave me a positional spiromety. It came back normal (I was feeling good, and I'm a barrel chested singer - honestly I don't think I'll ever have an abnormal spirometry until I have one foot in the grave). By the way, I was told that the bedside mip/mep were low for the first few hours, but the next afternoon the mip was low-normal but the mep was still quite low (I haven't verified this just got it from the rt).

At this point I was frustrated, still hadn't seen or heard from Dr. X. I decided to make myself sick so I could show them how it gets. After 10 minutes of walking in the hall I was completely out of breath for the rest of the afternoon, the right eyebrow had fallen below the brow bone. I reclined in my hospital bed and was able to verify that my oxysats would fall after about 10 minutes to between 90 and 93. I felt like there was a giant rubber ban around my chest. I told the Dr. (fellow) all of this. She could see it for herself but it didn't seem to make much of an impression. I asked when the neurologist would come to talk to me and she said he wouldn't, that they were going to discharge me. So I wrote down exactly what was happening, the date and time and signed it. When they came back to discharge me I told them I wanted that entered into my chart. Suddenly, they're concerned. Suddenly Dr. X gets called and Dr. X is concerned. Thinks I still need to stay in the hospital. I told them (politely) that this is how I always am and I can't afford to stay in the hospital forever or even another night, and I don't want to stay in the hospital. What I want is some treatment. They said, fine you can leave bc we're not going to help you, just sign this form. Eventually they brought up the form which was to release them from all liability. I declined. By the way, I never did actually see or hear from Dr. X while in the hospital.

By the time I got to the airport I could barely breathe, my face was falling down. I called my father, sobbing, who told me to get a taxi to a hotel when I was able and he would fly up and help me get home. I finally got back yesterday.

So, that's my story. Call me crazy, I still think I have mg. I don't have much limb weakness, but hey those antibodies aren't hanginging around playing poker and not doing anything. I am fighting a tidal wave of despair and depression in addition to worrying about the bills. I'm not sure what to do next. I suppose I'll wait to get a second opinion from the east coast. The waiting list is a year though.

Anyway, thanks to anybody who managed to slog through this. I really appreciate it!! I just had to get this out of my head.

Ally