So my whole world felt like it fell apart  yesterday.  It all started on Friday when I went to my endocrinologist for a weight and liver check.  I was having one of my attacks. The ones I have described where I have slurred and labored speech.  I had taken a shower a couple of hours before my doctors' appointment and had the stuttering, body seizure, shaking, and difficulty talking attack.  The talking didn't get better this time.  The doctor walks into the room and I am trying to talk to me.  He asks me what's wrong.  I tell him it's just one of my attacks, part of Cushing's, with rest it will get better.  He tells me NO!!! NOT PART OF CUSHING'S!!!

I say Yeah. Been happening a lot more since July 2 surgery attempt. It will get better with rest.  He tells me again that No... Cushing's is endocrine problem. The trouble with the speech and what I was describing is a neurological problem and he asks if he needs to send me to ER.  He finally does some research and tells me he thinks it could be a "rare" disorder called Myastenia Gravis.  But, according to him, this would be "extremely rare" especially since I have Cushing's also.  He realizes that we have never done an MRI to check my brain for possible tumors. So, since surgery is scheduled for Wednesday he orders a STAT MRI of my brain to rule out brain tumor, pituitary tumor, and MS.  I go to the hospital as outpatient for MRI.  Because of my size, I do not fit in their closed MRI machines... They tried 2 of them.  (I am happy to report I had lost 4 pounds so I am down to 321 lbs.)  I end up at another outpatient facility that has an open MRI.  I am able to get on this machine, fit, and keep myself from having panic attacks to do the test. 

Seven hours after I originally left for my doctors appointment, my daughter and I get back home.  As we pull in the driveway my doctor is calling me with test results from MRI.  Good news.  No brain tumor, no signs of MS, and no pituitary tumors.  Which means it could still be this "rare" myastenia gravis disease.  So, the doctor says he has talked to a neurologist.  Since we have no time to test for this disease before my surgery we are going to try medicine for it.  IF I don't have the disease the medicine will not hurt me. It basically won't do anything... IF the medicie works, then I probably have the disease.  My husband goes to the pharmacy to get the pills.  There are 4 of them.  I am supposed to take them at the beginning of an attack and see if they help with the symptoms.  So, I wait. 

Saturday morning I was at my in-laws, who live next door, having breakfast.  I get through breakfast and start having an attack.  My daughter helps me home and I barely make it in the door.  I sit on the bed in full attack... seizure, shaking, can't talk, stuttering, eyes drooping, have to close eyes because they are too heavy to keep open, and whole body aching.  I manage to take one of the pills with some water.  I lay down and we wait.  I don't know how much time passed, only about 10 or 15 minutes.  I can feel the difference.  I try speaking and say my daughter's name, in a normal voice.  I ask if she can hear me.  She says Yes.  I am talking totally normal, no stuttering or difficulty talking at all.  My body has stopped shaking and I can feel it easing up of pain.  My eyes are fine and my symptoms are going away.  In 15 minutes tops my symptoms are being relieved.  I am both happy and upset because this means I probably have myastenia gravis. Yet another "rare" disorder to add to my list of diseases I have.

I took the medicine as prescribed all weekend.  One pill every 12 hours as needed for symptoms.  I felt the medicine wear off and another attack would come on about every 12 hours.  But I felt better all weekend.  I was able to get up and walk around and actually felt like I had energy.  I was awake more over the weekend than I have been for months.

So, it brings me to yesterday.  I called my doctor as soon as I could to let him know the pills were working.  I had taken all 4 of them and now need to know what we need to do.  He calls back right away and says we probably need to cancel my adrenal gland surgery.  My world stops.  WHAT!?? He explains if I have myastenia gravis and go into crisis during surgery it would kill me or at the very least I would end up on a ventilator... So, that's what happened in July during my surgery?? Yes, probably so. 

I have to call a neurologist in St. Louis today to set up an appointment for testing of this new disease.  My adrenal gland surgery is postponed until sometime in November.  This much recovery time ahead of me, I have to make a decision about my job at the library.  I love my job and the people I work with.  I have been there for seven of the most difficult years of my life and the people I work with are family to me.  The have been through my dad's illness and death, my pregnancy with my son and all the trouble I had with it, my first husband's cancer and death, my mom's illnesses and strokes, my oldest daughter breaking her leg after being hit by a car, and now my illness.  They have supported me and done more for me than I could have ever dreamed.  I will never be able to thank them enough for everything they have done for me and my family.  I can't keep having the department I work in be short handed because of me.  So, I made the decision that because of my medical condition and long recovery time ahead of me I am going to have to let them replace me.  My boss is very understanding and she reassured me that once I am able to come back to work, they will find a position for me. 

Hard day, I cried a lot.  Hoping today is much better day. We shall see.  I am NOT giving up.