Anyone with Central Pontine Myelinolysis

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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.

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  • Posted

    I am a central pontine myelinolysis survivor and trying to find more information about rehab and treatment.
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  • Posted

    Hi, I have CPM and have had it since 2005. I am so sorry to hear about your sons condition and appreciate that your original post was written some weeks ago. May I ask how he is doing now? Please ask me anything that you wish and I will try and answer the questions as best I can.

    Best wishes,

    Kelly

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    • Posted

      Hi Kelly,

      Thanks for actively helping and sharing your experience on other posts.

      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

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    • Posted

      Hi Atul

      My father was also diagnosed with CPM about 4 years ago. His recovery has been really slow esp because of uncontrolled siezures.

      Can u provide any advice about the kind of care given to your dad?

      Thanls

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    • Posted

      hello,

      my name is frank, i stayed in hospital for 9 months. it was month 3 that was blinking eys and moving toe and fingers. i'm 57 and it took 2 yrs to be able to walk with cane. a lot of work was involved

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    • Posted

      Hi Frank,

      What exercises did you do exactly? Please help with providing information realted to this.

      My father just had 3 seizures last week and is still in hospital not reacting.They have given him a lot of medication. I dont know if that might be the reason. They are reducing the medication but increased a new liquid.

      My father also lost his eyesight due to this about 3 years back.

      Does anyone know of any cure for your eyes? also any cure for the repeated seizures?How can we prevent this from happening in the future?

      Thanks

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    • Posted

      Hi Parul,

      Sorry to hear that. My dad is under nursing care and after roughly 6 months of coma has opened his eyes and is able to move his hands little bit. Still he is not able to speak or eat. For last 30 days, he has been expressing pain and I don't know whether pain has increased or now he is able to express the pain or is there any other reason. My father had seizures when this disease started but not now.

      Thanks,

      Atul

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    • Posted

      Thanks you Frank for sharing your experience.

      My father recently has been trying to speak up. i think it is some improvement as he was not able to make any sound earlier. He has been making sound as if he is in extreme pain and he makes his hands very stiff. Did you have similar experience as part of your recovery.

      Thanks again and God bless you

      Atul

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    • Posted

      i was never in pain. just could'nt move. i wish i had someone to move all my limbs. i have to do a lot of stretching. i still can't control anything: bladder, bm, emotions, tears, saliva, etc,etc. skin is real sensitive. no hot showers, can't go barefoot. my brain was not affected. feel free to ask me anything.

      good luck

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    • Posted

      Thank you Atul.

      Also, you say u live in Texas....How does insurance cover your dads care? I would like to bring my father here from India but am unsure if I will be able to pay the medical bills and get someone to care for him.Any advice would be much appreciated.

      Thanks

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    • Posted

      My son in law was just diagnosed, he went to the hospital because of vomitting, and stomach pain, and the alcohol symtoms. they put him out for 7 days and then brought him out of that, he was unable to walk speech was not the same( vocabulary) spent 3 weeks in the hospital, he is home now my Daughter says he still needs to use a walker or a wheel chair for long distances, is unable to make a sandwich (motor skills) he is depressed recently he is unable to talk for 15 20 min upon waking, she says he thinks he is saying words but its garble, she is afraid it is getting worse, does it continue to show new symptoms? What should she look for. She really knows nothing about this , just what she has learned from the doctors, and online. she said his legs are painful, sensitive, and gets very cold. Could you please give me some info so I could help her. They live in new orleans, I am in michigan, which is very hard on both of us. Thank you
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    • Posted

      Hi Kelly my mother was recently diagnosed with cpm also known as ods and she has lost the ability to walk and her speech is very bad and has trouble swallowing. She has been in a rehabilitation therapy center for two weeks and has not improved at all. I guess my question is will she ever be able to walk or talk right again or will it improve at all? It is so heart wrenching seeing her like this. It breaks my heart she's 54 years old and has a long life ahead of her. Any thing u recommend or tell me would be greatly appreciated for I need to prepare my self for what is to come. Thank u and god bless u!

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    • Posted

      Tanya,

      Recovery for some can be very slow. It took me a good 3 months with therapy before walking with a walker and 6 months with a cane.

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    • Posted

      i went from bedridden to taking a cruise two weeks. and going to mexico in july. i have been working out 2-4 hrs a day for 11 yrs. progress has been slow. my balance still sucks. had to buy walker on cruise
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    • Posted

      Hi , I had cpm nearly 10yr ago and it's been a long journey. I had to learn to walk , talk ,write but recovering can be done, be supportive and help with memory issues as I found that really difficult and still have problems , increased activity sends my brain into melt down so a simple thing like looking for something in a supermarket can leave me feeling tired , but with determination you can make the best recovery you can hope for , I hope this makes sense,all the best 

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    • Posted

      Frank,how much of your pins was affected? I found out my sisters was 88% affected. Pretty devastating! Now another for it has caused her to have serotonin syndrome ! She went from eating and taking and tAking steps to worse shape than she was when diagnosed with CPM
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    • Posted

      I'm not sure , I will try to find out ,I have found that there is no help out there for people with cpm in the uk so I going to push for more answers .when I was diagnosed with cancer last year it really affected me , now my balance ,speech and memory have messed back up and I can't find anyone who understands cpm and the effects of news like that can have , the cancer was removed and I'm making a good recovery. I had a stoma  fitted , even though it's been a massive thing in my life over the last year I still walk out of my bathroom without my stoma bag on because I just forgot. I'm waiting for disability Sheffield to contact me I'm hoping someone might be able to answer some of my questions that I have been waiting 10 yrs to understand, 

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    • Posted

       am so sorry to hear of the things that been happening to you. Yes i would definitley look very hard into it, because CPM is caused by a doctor not treating you correctly. Dont let any of this get you down though! keep up the good fight, and its people like yopu that continue to help me help my sister conitune to fight! thank you for sharing your story. You will be in our thoughts and prayers for peace and healing! :-)
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    • Posted

       I know she has been rehabing for a long time. She got sick again from a doctor  overdosed her sratonin,and now she is all contracted, and her muscles spam all of the time. She just got a baclofin pump and botox injections in her neck, because her neck is pulled all of the way sideways where here ear actually lys on her shoulder. Frank do you know how much of your pons in your brain was affected. I am trying top see how these different people like you and your CPM is com[paired to her CPM because her pons is basicly liquified is what the doctor said.
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    • Posted

      I was diagnosed with CPM January 6th 2007 took me a year of therapy to be able to walk speak and function. I still have Tremors and pseudoseizures some of the medications that helped have been lorazepam and Lyrica. Find a good neurologist that specializes in it with CPM my prayers are with you you have a long journey ahead but be positive
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    • Posted

      Hi Kelly, 

      No idea if you will receive this, however, giving it a try smile 

      My name is Caroline, also a mother of a son who is diagnosed with CPM. I hope you don't mind me contacting you.... but i see you are 13yrs in. I would love to know how you doing now. If there is anything you can suggest that might be able to support my son at this early stage?

      Blessing

      Caroline

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