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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

280 Replies

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  • medicinecpm
    medicinecpm elaine04862

    Posted

    hi, i am a survivor of dreaded cpm, if you would like any information on my recovery please let me know.
  • miccaela7
    miccaela7 elaine04862

    Posted

    Hi! I developed cpm about a month ago. I was in a coma for 4 days. I guess I'm one of the lucky ones, because after one week I was walking it was really hard but I could move. Now I can move better but still not like I used to. After 7 days of been in the ICU when they made me stand up I noticed my vision was weird I felt dizzie, and after a couple of days thats when I noticed that I was seeing double. It has been almost three weeks and I haven't see improvement at all. Had someone had this experience? Did they got better?
  • dudley1978
    dudley1978 elaine04862

    Posted

    Hi to all I suffered cpm 9 years ago and spent 4 months in hospital I again have almost made a full recovery, I have balance issues and short term memory loss . I will try my best to answer anyone who wants to speak about cpm. 
    • beth97920
      beth97920 dudley1978

      Posted

      ditto with the balance and short term memory issues.  it has been 5 years for me, but I agree.....ask anything !  We would be happy to answer! beth
    • Scaggsgirl4
      Scaggsgirl4 beth97920

      Posted

      Hello dudly1978,

            My name is Julie and my little sister 46 yrs old has been diagnosed with CPM and Extra CPM for 3 months now. Any info on any part of what your experience was like would be so helpful, andwould shed some light on an otherwise very dark area. Thank you for putting this out there.

    • Scaggsgirl4
      Scaggsgirl4 dudley1978

      Posted

      dudley1978,

        My little sister 46 yrs old has had CPM and Ex. CPM for 3 months, She has come a long way from not responding to responding moving her limbs talking, but now has started to have some trouble again with swollowing and talking. Could you please share your experience with me. I have reached out on here twice and no one has responded. I have ebven placed my phone #. Please help me understand what is going on. Any info you can give me is greatly appriciated.

    • dudley1978
      dudley1978 Scaggsgirl4

      Posted

      Hello I'm sorry it wouldn't let me write back , I just took things slowly and got a much help understanding the condition it get frustrating when people don't understand your condition and many people don't you feel like you have repeated yourself over and over . Try and be there at every opportunity to show support and let her know she can beat this but she's got to be a fighter it was 9yrs this month I beat this and I just beat bowel cancer 2wks ago so I believe if you have the fight in you ,you can beat many things I wish you all the best 

    • beth97920
      beth97920 dudley1978

      Posted

      yes, it hasn't let me reply either!  I have had C.P.M. for 5 years this month, and I wasn't allowed to eat food normally for the first 3 months.  Sometimes I still have trouble swallowing!  I find I have to really chew my food, and make sure it isn't too tough, to be able to not have problems.  It has been a huge learning process with me and that is why it was exceptional finding these boards!  But persistency and practice do pay off for all of the symptoms....and lots of prayer!  The balance is also still an issue, but so much better.  I sure I am glad this let me respond this time!  and tell your sister to keep up the good work!

       

    • dudley1978
      dudley1978 beth97920

      Posted

      Doing little bouncers on a trampoline also helped with my balance 
    • beth97920
      beth97920 Scaggsgirl4

      Posted

      Boy, no one understands...except the odd doctor.  But I find constant repetition in everything....speaking, writing, walking. trying to balance. singing like a strangled cat, trying to exercise, etc.,etc. slowly seems to help.  But so much effort doesn't result in gains right away.  But I noticed each year I was surprised that I was slowly improving in everything.  Sorry, I have to go but I sure wish the whole family fights through this.  Most of the time, the support of my family has been awesome, but there are things they still mess up on! 

    • Scaggsgirl4
      Scaggsgirl4 beth97920

      Posted

      Thank you beth97920 you all have given me more encouragent. I have done a ton of research, of what is available that is, and i know that its going to take a long time, i just get scared sometimes she might slide back into where she was. There is nothing out there about what recovering looks like, what a servivor went through, or anything. This site has helped me more than any medical doctor or research. Thank you both for replying today and if you ever think of something, anything, that yiou may feel might be helpful for me to tell her or anything i could know it would be so appriciated. Please ahve a blessed day, and thank you again.
    • beth97920
      beth97920 Scaggsgirl4

      Posted

      You are SO welcome!  and I am sure at some point I will think of more....I will let you know if I do!  I even practice dancing all the time, walking in high heels (for balance, and I can only do it in the living room), balancing on one leg (I last a millisecond), I do weights as I found I has significantly become more weaker than before, practice math...  I will think of more probably!  But it basically comes down to practice!  take care!
    • Scaggsgirl4
      Scaggsgirl4 beth97920

      Posted

      Thank you! She far from even walking but they are standing her in position she just hasnt put weight on her feet so she has a ways to go! I will never give up or let her!! Take care!
    • beth97920
      beth97920 Scaggsgirl4

      Posted

      I remember those days!  I never DREAMED of sitting or standing again, let alone walking!  It's just such a longgggggggg journey!  My thoughts and prayers are with you both!

    • joe64679
      joe64679 Scaggsgirl4

      Posted

      Scaggsgirl4,

      How is your sister? Sorry for the delayed response! It's been a very busy summer for me. I'm still in speech therapy after 4 years. Don't let it get her down. Since the incedent I've been to Australiaa and snorkled with help of my partner amd friends and this year a cruise and we're going to Puerto Vallarta, Mexico for Thanksgiving. Where do you live? I thought I saw a 713 area code number.

    • Scaggsgirl4
      Scaggsgirl4 joe64679

      Posted

      joe64679

      She is doing better, but now has speudobulbar palsy. It has affected her throat muscles and her emotional control. She has a heaving tick and crus hysterically for no reason, but it will get better with time. I'm so happy to hear of your adventures. I wanted to know if you are walking how long it took and can you move your arms and hands (fine motor skills)? How long did it take for you to get where you felt you had somewhat recovered? Thank you so much for reaching out , you all have no idea how much these posts have helped me and her!! We live in Tulsa I have brought her here to be closer to me. 918

    • joe64679
      joe64679 Scaggsgirl4

      Posted

      I'm glad to hear she is doing better. I also had mood swings (crying a lot) at first but that has resolved. Yes, I'm walking. it was a tough start but it took about 6 months to feel comfortble without an assisted device and then started working with a trainer at the gym whoo helped a lot. My main challange now is the fine motor skills because I have ataxia due to the CPM. I've beeen takming a B complex  vitamin, both regular and time released, daily. Vitamin B was recommended by the Ataxia Association website. It does help me enough to function. Also, I have significant problems speaking and some problems swallowing. My speech therapist says I have dysphegia. I'm not back to normal but can do all the activities of daily living. It just takes a little longer. Keep up the good work!!!

    • sheila70411
      sheila70411 Scaggsgirl4

      Posted

      How's your sister doing now? My nephew is 3 months with CPM. He's in rehab now.  Each day we are thankful for little important.  He is now able to sit in wheelchair but not able to swallow. It's very hard but we believe with prayer and determination he will walk again! 

    • jasper77658
      jasper77658 joe64679

      Posted

      Hi Joe64679,

          My aunt is has CPM recently. She has been crying and moaning a lot, why would that happened and what can we do? Appreciate your help! thanks. 

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