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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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  • joe64679
    joe64679

    Posted

    Hello Kelly,

    I was diagnosed with CPM in November of 2012. I have made a remarkable recover from I'm told. I can complete most task, except I have tremors in my hands. Did you experience this and how did you overcome the obstacle?

    I live in Houston, Texas and have had a lot of rehab. People have told the one thing that need work is my speech.

    Thanks,

    Joe

    • atul54918
      atul54918 joe64679

      Posted

      Hi Joe,

      My father (67 year old) was diagnosed with CPM 4 months ago. He was admitted into the hospital due to lower sodium and potassium and ran into CPM complication as probably rate of sodium correction was faster than his brain was able to tolerate. He stopped speaking, swallowing and went into coma.

      After 3 months, there is some recovery. He is able to blink his eyes and lift his fingers. He is still not able to speak etc. I wanted to check if you know how the recovery looks like for CPM patient and if there is any thing we can do to expedite the recovery.

      Thanks again,

      Atul

    • parulsharma
      parulsharma joe64679

      Posted

      Hi Joe,

      How old were you when you gor diagnosed and what was your road to recover like? What exercises did you do to gain strength?

      My father has been having physiotherapy for years but no improvement.

      Is there anythign I can tell the physiotherapist to do for my dad that you can advise?

      Thanks

    • resa91668
      resa91668 joe64679

      Posted

      I have a brother that has been recently diagnoised with CPM.   We are looking at treatment options in houston.  What suggestions do you have.
    • joe64679
      joe64679 resa91668

      Posted

      TIRR in the medical center. If he doesn't have insurance sign up for the affordable care act and make sure the plan chosen covers inpatient rehab. That is we did and I was diagnosed 4 years ago Thanksgiving weekend.

  • elaine04862
    elaine04862

    Posted

    Hi Kelly and Joe, My son is doing really well he has been out of hospital for 3 weeks even though he discharged himself because he was so impatient he wants to run before he can walk. He has regained the use of all his functions even though his walking is still very stiff and often gets shakes in his legs, his core still needs a lot of strengthening but overall doing ok. It is his mental state that seems to be affected more than anything else, his short term memory and acting quite childlike at times either having fits of giggles which he cant stop or having a tantrum if he cant have his own way. We know that his sodium levels were raised too fast and have the proof but where we go from here I have no idea . It is good to be able to talk to others who have gone through and are still going through this condition as there are not many I can talk to that know about this condition. Thank you for getting in touch.

    Many thanks

    Elaine

  • pamela33398
    pamela33398 elaine04862

    Posted

    Hi Elaine we are a family out of r minds my niece who is 27 has just been told she hasCPM we have never heard of it and don't know what her outcome will be we we're told she came of the drink to quick' she is in ICU at moment difficulty breathing, but just knowing someone else has had similar experience helps. My sister just can't cope as my niece has an 18 month son. My niece is just moving her eyes but not sure they are focused on anything, and she keeps trying to mover her hand but that's it. Any information from anyone will be grate full.
    • kelly18963
      kelly18963 pamela33398

      Posted

      Hi Elaine, sorry to hear about your niece. May I ask, did she just decide to stop drinking one day and did she do it at home? Cpm

       has many different outcomes so it's very difficult, even for doctors to give you a prognosis. Without wishing to scare you it can be life threatening but equally it can have a very good recovery too. I still suffer with poor balance and it affected

      My eyesight, I have double vision and something called oscillopsia. That means when I move my head everything spins which also affects balance. I currently use 2 walking sticks but bear in mind that I was in a wheelchair when I left hospital. I have problems with my bladder also but not entirely sure that's cpm as I have neuropathy also. I was extremely poorly when in the hospital but not quiet as poorly as your niece. It's common to have leg and arm tremors but for a lot of people they get better with time. She will likely need physio to help balance and strengthen her muscles too. You should note that some people make a complete recovery. Are you in the UK? Let me know and I will send you some links to the condition. It's considered a very rare condition and information is hard to come by. If you have any questions, please feel free to ask.

      Wishing your niece a speedy recovery..

      Best wishes,  Kelly

    • pamela33398
      pamela33398 kelly18963

      Posted

      Kelly thanks for your help fullwords, yes my niece has drank on and off for few years but did just stop drinking at home, but WK or so before that had started vomiting an weakness in legs but thought it was the drink, became confused and was taken to hospital,we're they gave her vitamins, after five days sent her home to recover, but two days later become worse was taken bk to hospital and over WK become so I'll and now still in ICU, was sedated again last note due to mucus building up an she can't swallow,yes living in UK would be grate full for any links or info, thank again

      Emis Moderator comment: I have removed the email address as we do not publish these. Please use the private message service to exchange links if required.

    • kelly18963
      kelly18963 pamela33398

      Posted

      Yes, that sounds like classic CPM. People often start to perk up before it kicks in. Swallowing is a common problem, it's called dysphagia..

      The following link takes you information from The British Medical Journal, it is quite long but will give you lots of helpful information. You will note that the studies into this condition are very limited but it should go some way to explain some things. If your not sure about anything or have any questions, feel free to ask away...http://jnnp.bmj.com/content/75/suppl_3/iii22.full

    • miccaela7
      miccaela7 kelly18963

      Posted

      Hi i was just discharged, in my case i'm one of those cases that i had a quick recovery but my eyesight... i have double vision. The doctors keep saying it will get back but it has only been a week and yesterday i went to an eye doctor and they say my prism (which it has been taped to my glasses) has doubled! Any thoughts anyone?
    • corrinah
      corrinah pamela33398

      Posted

      This sounds like my sons gf ?? She is only 21 and cannot communicate or speak. She can move to get comfortable and has open but not sure what she can understand. It's devastating. She also has damage to her basal ganglia. My son is only 19 and trying to cope with seeing his gf like this and I am just so upset to Serbia in pain and see her this way. There doesn't seem to much known about cpm.

  • joe64679
    joe64679 elaine04862

    Posted

    Pamela, Kelly is right about recover.  Your niece may be dealing with "locked in syndrome".  I had this but could commicate by eye blinking.  Please remember that she may be able to hear what is being said around her.
    • pamela33398
      pamela33398 joe64679

      Posted

      Thanks Joe we're you really bad it looks like my niece is moving her eyes but they are not focused, I also believe she can hear us although there is no responds or movement,thanks again for you input
    • joe64679
      joe64679 pamela33398

      Posted

      I was locked in for about two weeks. I then started involuntaryly moving my right foot and progressed from there. I stared physical and occupatuin therapy.  Now about one and a half years later I have difficulty with balance and tremors in my arms and hands. I had Botox in one arm, right lip and my brow to release tension and help to train my muscles. It takes me longer to do some things but I'm working on it.
    • kelly18963
      kelly18963 joe64679

      Posted

      Glad to hear that you are making steady progress Joe....
    • corrinah
      corrinah joe64679

      Posted

      If I may ask how long did it take you to come out of it? I think my sons gf may be in this state. She. cannot communicate at all but rather just stares at you
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