Anyone with Central Pontine Myelinolysis

My so sorry to hear your family is dealing with CPM. My little sister was diagnosed 4 weeks ago. I am her only family and have never heard of this. She never went into a coma, but did stare at the cowling for about 2 days. She had locked in syndrome with arms but now appears her neck is doing it. She stares and turns her head to the right only. I am completely uneducated on this and any of its recovery process, only what the doctor has said, which is its a slow recovery and we just have to wait. Insurance is denying her aggressive rehab and I am scared that she will not Exocet fully or as much as she would have a chance to because of that. If you or anyone out there has any information, tips on seeing recovery, what recovery looks like please please help. Thank you and I will keep your family in my prayers.

My father had liver transplant and after that he was down. dr told he is suffering from CPM. right know the dr prescribe the tab. he is able to eat blenderised food.  he couldnot able to speak and no walking plz suggest what to do

Hello, first off I am so glad I found this discussion site. I have been trying to find some answers about CPM and felt so alone and lost. I also have CPM,  for almost two yeas now.  I had Hyponatremia and was given IV fluids way to much and too fast. about  a week later I started loosing my balance, started falling and just felt strange and ill. After several test and an MRI I was told that I had an inoperable brain tumor (not true).  I was very sick and nearly died. Was in the ICU and coma for a few weeks, had to be resuscitated twice. I had to learn how to stand, walk, swallow, write, couldn't even hold a cup of water. I could talk but made no sense.

I stayed in the hopital for nearly two months and then was transpoted via ambulance to a rehab hospital. I had to have colon surgery ( no cancer and a long story) and had a colostomy bag for one year.  After being released from the rehab, I recieved home health care, PT, OT and a nurse for about three months. I have come a very long  way in the past two years.  I can walk with a can or walker rarely use the wheelchair anymore. Writing is still difficult even typing this, is taking very long.  I have Neuopathy, Neuralgia, crying spells, difficulty concentrating, tier easy, forgetfulness ,sensitivity to hot or cold, depression,anxiety, difficulty swallowing and some times breathing problems at night. I have a c-pap mashine. I am taking a lot of meds. for all the symptoms that the CPM is causing. 

I was told by my many doctors that I am lucky and that many people die from cpm. I have good and bad days. Although I have improved a lot in allmost all areas, I also find constantly new symptoms. I am continuesly working hard to improve and to not loose what I have learned back. Physicaly and mentaly. 

I hope this might help someone here just like it helped me to read  what other people wrote on this site. 

My hart goes out to all of you. I wish you all the best. Do not give up!