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Anyone with Central Pontine Myelinolysis

Posted , 49 users are following.

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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  • swapnil007
    swapnil007 elaine04862

    Edited

    Hello Guys,

    I've been reading all the posts related to CPM which are now almost 6 years old. Dunno what's the status of all these patients but I hope all are doing fine.

    My mother, 61 is recently diagnosed with CPM after 2 weeks of ICU. She was admitted for hyponatremia & hypokalemia. The reason again for CPM is rapid correction of Sodium.

    For first 5 days she was doing fine & was able to communicate a bit & swallow things. Later on he right hand lost control though was sensitive & after a couple of days same happened with left hand. she though is able to move her legs but not hands. Also cannot swallow & has got an altered mental condition. He hands too have become stiff & can only move her eyes a bit.

    After 3rd MRI, when CPM was detected we have immediately started iViG treatment. Today is the third day of her dosage & still no improvements. Rather she is facing side effects of fever, chills & is continuosly sleeping since the ivig started. Hoping for the best positive progress going further.

    if anyone has been through the same situation, please reply so that the discussions help understand the how to go about it.

    Thanks

    Swapnil

    • alison_74676
      alison_74676 swapnil007

      Edited

      Sorry to hear about your mother.

      it seems to me that everyone has a different reaction and response.

      I'm NOT expert in CPM, but from what I've researched myself

      when trying to correct low sodium levels, it need to be done VERY slowly, to prevent the brain swelling with water. When I had my sodium levels dropping in 2014, I was sitting up in bed & talking for a few days (although sleeping a LOT) then around the 3rd day, I opened my eyes & was quadratic, only able to blink.

      Almost six years later and a very slow recovery and lots of mobility issues, I would like to offer you LOTS AND LOTS OF HOPE . I couldn't say how or even when your mother will recover from CPM, but one think I would say is massage her muscles as much as you can.

      (I don't know what ivig is (soz)

      MASSAGE & PHYSIO IS A GOOD IDEA RIGHT NOW.

      GOD BLESS YOUR IN MY THOUGHTS AND STAY SAFE!

    • Cleong
      Cleong swapnil007

      Edited

      hello

      stay strong swapnil. this journey of recovery for your mother takes time.

      agreed with Alison massage helps to prevents muscle and also tendons from shrinking.

    • swapnil007
      swapnil007 alison_74676

      Edited

      Thanks a lot Alison for your reply. Hoping for the best & staying very optimistic for her quicker recovery.

      iViG though is suggested by the Neurologist. It isn't a guaranteed therapy, but people with similar diagnosis have shown improvements with this therapy. Hope it turns out positive for my mother.

      Thanks

      Swapnil

    • swapnil007
      swapnil007 Cleong

      Posted

      Thanks a lot Cleong. This is now a tough road ahead. Hope your Dad is doing good.

      Swapnil

  • Chrishobin
    Chrishobin elaine04862

    Posted

    i have cpm. its a hard road, its been two years and i still havent recovered 100 %. keep your head up. im looking for a support group,

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