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Anyone with Central Pontine Myelinolysis

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elaine04862
elaine04862

Hi anyone out there have any information on central pontine myelinolysis , my 26yr old son has been diagnosed with this condition. He has been in hospital for 6 weeks and spent the last 4 weeks in intensive care, he went into hospital on Christmas eve after having seizures to do with alcohol withdrawal the first couple of days he was doing fine then things started to go wrong. He started to loose his balance he started slurring his speech and was getting very confused. He then lost his ability to swallow then started to slip into a coma at which point intensive care induced him into a coma and we were told not to expect him to survive. A week later he started to come round and could breath for himself but could only use his eyes,3 weeks later and he can communicate by blinking his eyes can squeeze my hand with both hands can wiggle his toes and can understand everything we say to him. We know we have a long way to go and don't know what the long term recovery is but would be grateful for any info from anyone who has come through this condition.

4 likes, 280 replies

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  • diane1981
    diane1981 elaine04862

    Posted

    My partner was diagnosed with CPM 8 weeks ago due to a complication with his sodium being raised too quickly. We were basically told by a doctor that he would never walk or talk due to this syndrome. Within about a week and and a half after his diagnosis he was able to move his hands and use an alphabet board. Every day his mobility and speech got better and better. One morning I went into high dependancy and was was met by two very excited nurses who told me that he had actually got out of bed and was able to walk a couple of steps.

    After high dependency he was moved to a another ward, where his feeding tube was removed and he was able to eat soft foods. He was able to leave hospital after two weeks of moving wards.

    He now can walk and his speech is nearly back to normal. He gets tired quite easily and he has problems with his fingers as they are still quite weak so finds it hard to do certain things. He was a bus driver before this happened and unfortunately lost his job because he was told not to drive for a year. It was my sisters that found this discussion board and when we were given the news that he wouldn't talk or walk the messages people posted gave me hope. I realise that my partner has been very lucky regarding this illness and I wish the best for the people and peoples families who are affected by it.

    • uschi65
      uschi65 diane1981

      Posted

      Hi Diane, yes your partner is very very lucky and I am so glad to hear it. Cpm is a terrible desise. It is rare and most Doctots have never heard of it. It does happen when your sodium is raised to fast. I hired a lawyer to sue the hospital, but was told that they are under a protection law. I think it is insane. I was a CNA and do to the. Cpm I can no longer work. I also am not allowed to drive, it has been nearly two years.
    • Scaggsgirl4
      Scaggsgirl4 uschi65

      Posted

      Dear uschi65,

             My sister has CPM and EPM, i have hired a lawyer as well due to the fact that her sodium was raised from 109 to 120 in just a matter of hours. She has lost everything due to this horrible disease, and i have hired a lawyer as well. Could you please share what you mean by there is a law protecting them? So happy that you are able to communicate as my sister is not abler to do any of that. She cannot speak,walk, eat, go to the bathroom (wearing a diaper) and is around the clock care. she is getiing better but as we all know this is a very slow recovery process. Thank you for any help you may provise. Bestwiashes and prayers for you and all who are fighting this horible affliction.

    • uschi65
      uschi65 Scaggsgirl4

      Posted

      Maybee we should all hire a law firm. Like the one with the baby powder .

      It is the doctors and staff that administer the sodium to fast. They shold know better. Everyone says it is a rare desise .I am not so sure that it is, I believe it is a hush, hush desise. 

    • joe64679
      joe64679 Scaggsgirl4

      Posted

      In Texas, Gov. Abbot was instrumental in passing a law that limits the amount you can sue for medical malpratice. In many cases the award to the damaged would only cover the care while at the hospital and not for the continuaton of care after the incident. I would like to discuss this more at some point. Take note, in Texas you ONLY have 2 years to file a case, so please talk to an attorney! Maybe we can private message eachother.
    • uschi65
      uschi65 joe64679

      Posted

      Dear joe, I am very much avare of the 2 year law trust me, however this whole CPM is real wrong ! I wish I had the fight in me ...

       

    • joe64679
      joe64679 uschi65

      Posted

      Me too, but I try and focus on therapy and getting closer to my baseline. As Dorie said in Finding Nimo, "Just keep swimming, just keep swimming."

    • uschi65
      uschi65 joe64679

      Posted

      I did get a lawyer a good one too that only does malepractice . She works propbono  so she has do be at least 70% sure she could win a case before taking it. She opted not to take mine. I am so thankfull my husband has a great job with great health insurance sins I am unable to work.  So... I do keep on swimming, takeing one  wave at a time. 
  • diane1981
    diane1981 elaine04862

    Posted

    My partner said that when he was lying not being able to communicate or move he actually heard a discussion between doctors saying that they had raised his sodium levels too quickly. The doctors obviously thought that he could not hear or understand things so thought it was ok to talk in front of him. We are looking to get access to his medical files and are thinking about taking this to a lawyer. Not just because of this but other things that happened in hospital that shouldn't have happened. We stay in Scotland and the laws will be totally different than the laws in the States.

  • nidhi17743
    nidhi17743 elaine04862

    Posted

    Hi All

    It seems that my mother has developed this condition. We don't have confirmation as yet as the ICU unit have basically made a big error. She had a general seizure due to it and now for almost 48 hours is not able to respond except opening her eyes. Looking for hope - does anyone know of recovery cases from a situation like this?

    • uschi65
      uschi65 nidhi17743

      Posted

      HI NIDHI, I am so very sorry for your mother and you. There is hope and lots of it! If your mom truely has CPM wich is a very rare brain desise/ brain insury. Did she have hypernatrimia? 
    • nidhi17743
      nidhi17743 uschi65

      Posted

      She had low sodium at 115 so I think it is hypo. Thanks
    • uschi65
      uschi65 nidhi17743

      Posted

      Ok. so more likely she recieved to much sodium to fast, that would explain her symtoms seizure and only blinking eyes, It called locked in syndrom. I am just a cpm survivor but learned a lot about cpm over the last 18 month. The only way to know for sure is an mri. It could show nothing for a few days, it will be need to be repeated. If it showes a "mass" or damage on the pons it is more likely cpm. 

      There is no cure but she need to be monitored very closely for her sodium level she might need a peg line that delivers sodium to her hart.  I will try to answer any questions that you have. I wish you and your mommy the best of luck and strenght. 

    • nidhi17743
      nidhi17743 uschi65

      Posted

      Hi, thanks uschi65 for response on private message and your support. I am hoping to continue to rely on it as time develops

      We have requested for a diffusion weighted MRI for my mother ( it is day 7). Will CPM or EPM show on the scan.. We are hoping that the beginning of this will show as my mom's symptoms started almost day 2.

      Thanks for also sharing that the patient understands everything - she was not opening her eyes when I called her name but when I started chanting the Buddhist chat she opened her eyes after a minute. I rubbed my hands over her arms, her legs , her shoulder. I have limited access to her as she is still in ICU.

      Please let me know if there is anything else me and my brother should be doing for her

      Best wishes

    • uschi65
      uschi65 nidhi17743

      Posted

      Hi, I just saw this message. I have not been feeling well. 

      How is your mom doing?

    • joe64679
      joe64679 nidhi17743

      Posted

      Bring a recording of Buddhist chants if that is what she liked. Ask if she can respond with eye blinks. One blink yes, two for no.
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