Funny I should run across this topic after having just experience this same thing last month.
My local neurologist was convinced by my symptoms that I had mg, but had no positive lab tests to prove it. After much foot dragging, he finally convinced me to go in the hospital for prednisone and Ivig treatment. He told me that the sixty mg of prednisone would probably make me worse. He was right about that! I got to the point where I was unable to chew or swallow solid food or pills. I was unable to talk or breathe well at times and my heart was not happy.
My eyes were very difficult to hold open and when I did, my eyes were painful to focus or move and my vision was blurry.
He was afraid I would have respiratory failure, so decided to send me out to Mayo, but hey didn't have a bed due to flu epidemic , so second choice was Emory University. I was not happy about having to be in the hospital, but I knew at least there they would get me a diagnosis.
They performed every sort of test on me and all the myasthenia gravis ones came up negative. Including the EMG that was performed while I was on mestinon. By this time I had progressed to needing a feeding tube.
Since all the tests were negative, and especially since I already took a .5mg nightly dose of Xanax to help me tolerate cpap, it had to be a conversion disorder that was causing all my symptoms, including my low blood pressure, palpitations, tachycardia, etc. they decided to withhold my mestinon without my knowledge and actually substituted Tylenol for one dose. There notes stated that I got better, but complained that I was worse. Then they cut the mestinon down from sixty to thirty mg every three hours.
I could tell that something was not right as the relief and the length of the relief period was greatly reduced, but I did not know what was going on on the background.
Upon their consensus that I was psychiatric, they abruptly pulled the nasal tube, took me out of icu, and put me on the regular floor. The only reason that I discovered the dosage reduction was when the floor nurse came in and plopped down a half of a mestinon tablet in front of me like a rude waitress. I told her it had to be crushed as I could not swallow and she seemed a little miffed at me for saying this. I think my saving grace was that by this time, the Ivig was helping me so that eventually I got adjusted to the reduction in mestinon.
By and by the whole troupe of doctors, including a psychiatrist and a neurologist came in and they decided that I could follow up in the clinic, but what I really needed was counseling.
I told them that I would be more than happy to seek counseling if that would make me well. In fact I told them that if it was in my head, that was a good thing. Because that meant that I did not have a life altering illness and that I was sure that I could get better if that were the case. I was open to any and all treatments.
So I mustered enough strength to be able to make my way shakily down the hall, at which point I was exhausted and didn't think I could make it back. I really needed to sit down and my legs were shaking with fatigue. Somehow I willed myself back to my bed with my only goal being to get out of there and get home.
I went home and next morning I called my local neuro and he was highly aggravated with what I told him. He told me to have someone drive me to Mayo Clinic ER. So I did. Well, of course they wanted the Emory records, and naturally they went with the first thing they saw, and they dismissed my symptoms and told me to get an appointment in the clinic.
I just was ready to give up and go home and forget about everything, and just learn to live with this thing.
A few days later my neuro called to tell me that my LEMS test had come back extremely positive and that he wanted me to come to his office right away. He explained what I had and put me straight in the hospital for five days of plasmapheresis. I am so happy that I got a diagnosis and that I got a treatment that has made me feel better.
I am now able to chew and swallow, my neck Dow not hurt, my eyes are almost normal. I still have some weakness and instability, but I can at least function and talk now.
So that's my story of my conversion disorder! I intend to get a copy of my positive test and formulate a letter to the offending people at Emory, not just for my own satisfaction, but for the future patients that may be so unfortunate as to end up there.