Anyone suffering or has suffered Central and Extra Central Pontine Meylonisis

My name is Julie and I my little sister Chriaty who is 46yrs. old has been diagnosed with Central and Extra Central Pontine Meylonisis. She went to er presenting with lethargia, slurring, and confusion. Bruises all over her body. Thought it was from drinking. Er said her sodium level was 112 they sent her to anothe hospital where it had gone up 115 then they sent her to a hospital and put her in ICU where they took it down to 109 and started raising slowly! Over an 8 day period her levels were getting back to normal bit she was slowly losing abilities to do anything. Move, swollow was the last thing. They had done a cat scan on Monday of the first week and no sign of CPM the next Monday they did another one and it was severe. Christy never went into a coma , she never stopped breathing requiring a trach. After staring at the ceiling for two days she has since slowly started coming back around. She is now fully aware of what is goi g on, she can communicate with delayed response by blinking. But she still is I. The locked in mode with her upper torso arms shoulder and neck. She was presenting with left beg led but that is starting g to subside as well. The scariest thing right now is she crus all of the time and very loudly. Cries tears. She has a history of severe depression but the faces she makes and the response to questions is that she is in sever pain all of the time . Especially when you touch her arms. They had her on low levels of Valium , Norco, and morphine, as well as Ativan but to no avail you could even tell she had received meds. She has now been I. The hospital for 55 days. I would love if anyone that has had or is still suffering or has has gone through this with a loved one, could give me any info any at all I would be forever grateful! Thank you so much. And BTW her Neirologists original prognosis was that if she survived she would not recover! Well I can assure you she is recovering! She is 100% aware and is responding well to therapy! She actually sat up with the bed angled up high she actually sat up away from it and said hey to me and turned her head. Today therapy got her up to the chair and she sat for 30 min. Please any info would be helpful! God bless and peace to you all who read this

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