Anyone with Central Pontine Myelinolysis

Posted , 49 users are following.

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

Prev Next
  • Posted

    Hello, My name is Kevin and I have CPM. I have had the condition for over a decade. I was in a hospital or rehabilitation hospital for months. I have had this condition as a result of drinking and quiting at home and being ill for four days. I am mentioning so you can know where I am coming from.

        I have seen a few different nerologists and there is no trearment other than one doctor had heard of use of an alshimers drug being tried, that is how I found this looking for that site. I have heard of vastly different out comes. 

        I just what to say that things did improve slowly, but never returned completely or addiquitly to my likeing, but life is pretty good!

    Balence remains an issue, but is more than just ok. Mental function can vary,but cann't determine what makes better at times.

         Socially I am akward (was bartender for 25 yrs.) so this is something still try to adjust to as this is not me. All and all you need to set a parameter to aspire towards and go for it. The sitting and woe is me will do nothing to help in fact just bring you down farther. The best thing I can say is look what you have and not what don't and make it special along with the people you hold close! And remember to smile!!

    • Posted

      Hi Kevin, it is now just over 2 years since Kieran was diagnosed with CPM and to a certain degree he is doing ok. He takes medication for his tremors as without them his body shakes badly,he walks with a slight limp,his short term memory is dreadful, he will ring me to say where he has put something because he won't remember where he put it. He has anger issues especially if he has had a drink,he seems to change personality after just one drink, but you just can't talk to him when he is in that mood. He has never had a follow up appointment with any medical professionals since leaving hospital,it's as if he doesn't exist. We are in the process of suing the hospital as there is medical evidence that they raised his sodium levels by 15 in 4 hrs, and that was the night he was admitted.
  • Posted

    Hello, I have had CPM for 3.5 years now and doing ok. What is the medication that Kieran is taking for tremors?  I also have tremors in my arms and hands and the nueroloogist told me there isn't anything that can help since they ataxia related. Although, I remember reading that Parkinsons meds might help. I cannot work because of the tremors. On NPR they reported a story on boxing and there has been another study on cycling. I have been trying both but the boxing is the only thing that helps a little. Here are the links:

    http://www.npr.org/sections/health-shots/2015/02/02/381937503/fight-back-against-parkinsons-exercise-may-be-the-best-therapy

    http://www.medicalnewstoday.com/articles/253197.php

    • Posted

      Hi Joe, Kieran is on Baclafen and it is a life saver for him as without it his whole body shakes and he would find it hard to walk. They have had to increase the dosage a few times but it does help him a lot, he sometimes has to take more than prescribed as his shakes are quite bad, but mostly he is functioning quite normal whilst taking Baclafen.

      hope this helps

  • Posted

    Oh, and I take Vitamin B Complex as well that helps with the tremors a little as well
    • Posted

      Thank you for sharing this. My father also has tremors in his feet and it bothers him quite a bit. I will add vitamin B to his medications. 
  • Posted

    Elaine, i'm sorry for your situation, but it is great that you are there for him- I mean Great! A viatmin deficiency of B6&B11 is caused by  drinking - being bartender for many years ( taking those is a helpful is hangover cure ). The fact that he is still drinking is in no way any kind of a positive for him! What I would suggest to you is to deflect in any way you can his drinking. This will not be easy! Drinking will only bring him down farther, if not his demise. In helping you with this is a group known as Al-anon which is most helpful with people that have friends and family that drink to much. This is a world wide organization. The cost is nothing, if you want to through a buck in for meeting room it is totally up to you. They Can help you deal and in turn help him.You can look for a meeting place in your area online. Pretty simple and oh so worth it. Your sons out come is culmenated in yours. thus making this benificial to you both. Your concern is more than evident and this is only a suggestion.

        I like you to know I had to look up spelling on like 8 words and check my writing 5 times. Not in anyway the same, but trying to work it !Wishing for you and him the best of outcomes!

  • Posted

    Hi everone, my step son was diagnosed with CPM about 2 months ago. He unfortunatly is an alcoholic and we beleive that his achohol usage was one contributing factor of where he currenly is now. He went into er and they treated him for severe dehydration and malnutition. His sodium level was at an umbelievable low 101.   2 days later the cpm symptoms started. An MRI confirmed that he does have CMP. He was in ICU for 25 days. He now has a trach and is currently at a post acute skilled nursing facility. He is able to now turn his head sqeeze our hands has a very stong gripdoing so. He can lift his head also. Hes able to move his arms from his waist to his face. This he has been just in the last week. He's been there for about 3 weeks now. He has what they call "locked in syndrome". Does anyone have any info on long term recovery on this condition? It seems that its not a very common thing that happens to people. Any advice would be greatly appreciated. Thank you, Michelle
    • Posted

      Michelle, enter "Beth" for your step son and it sounds exactly like my situation 5 years ago, trach, ICU for 33 days, alcohol abuse, locked-in syndrome, etc. etc.  I was told the first 3 months are quite rapid improvement, followed by continuing improvement for the rest of your life. Balance remains an issue.  I am also now in AA.  It is a ton of hard work but it eventually gets better and better.  I sure wish your step son good luck, and wish I would have had some answers back then....please keep in touch!  beth
    • Posted

      Hi Beth, that is so encouraging, thank you😊😊. we still cant figure out how this all came about. He wants to talk so bad. It breaks our heart. Im very optomisic and praying everday that he continures to make progress. I will keep you posted on his recovery. 

       

    • Posted

      After 2 months i could talk and eat....ask for the spelling board that the occupational therapists provide....I was whipping out full sentences with spelling for months.  It is a lifesaver!  Alcohol abuse causes the sodium levels to go out of whack...and in the hospital one of the neurologists told me I'd better quit drinking because they didnt want to see me in there again!  those spelling boards are so great because you cant write either....but you can point.  Please give him my best!!!  beth
    • Posted

      I will check into the spelling board, we took the ipad done there today but i think its too early right now. Thank you
    • Posted

      I remember locked in syndrome. Do anything you can to stimulate the nerves.. i.e, running a wash cloth over the skin, applying lotion to feet and hands. I had friends, their idea, applying/massage lotion to my feet and I swear it helped stimulate the nurves.  It also helps to move the joints so calcium doesn't buaild up.  I remember my father saying, "stay calm, you have all the time in the world". Have friends bring in music he likes. I did mind games during locked in syndrome trying to remember addresses, account numbers, phone numbers, and the TV was on closed caption so I could read. Thank god it was football season and JJ Watt just started playing for the Texans. Hee hee!
    • Posted

      Wow Joe!  Good advice!  All the stuff people did for me and I did as well (math mostly), without knowing it would be helpful....I should thank them!
    • Posted

      Yes that is wonderful advice. My father was completely unresponsive for 3 months and we had a daily routine of stimulation. We did passive exercises on him 3 times a day that means we moved every joint on his body, his fingers, his wrists, elbow, shoulders, knees, ankles, and toes. We also had reading, music and tv sessions. We would also give him back, leg and arm massages. We also shaved his face everyday with an electric razor, the vibrations help stimulate the facial muscles. The only thing I regret not doing more often was putting him in the sitting position. His muscles are now sore when he sits for a while since he was laying down for so long. 
    • Posted

      It's never too late to start.  The nurses would put me in this sling-backed type wheelchair for 2-3 hours per day to start training my core muscles.  I hated sitting up, but now I am glad they made me do that...they didn't give me a choice!  It's been 5 years and I am still strengthening as I realize I am weaker than other people now.  Tell him I wish him all the best and to keep on working at it!
    • Posted

      Beth - they had me in the samed thing when I got to rehab but it was for the entire day. They even put a schedule in the room for the aides. LOL
    • Posted

      Hi Beth!! I have to tell you that my step son 29years, has been in the post acute nursing facility for about a month now!! I am so glad to share this miracle with everyone who is following this post. He is mobile, (walking w/ walker, speaking, and has graduated to eating solid foods, the g tube was pulled out yesterday and if his O2 stays at 99 they will be removing his trach. He is doing physical therapy everyday and making such incredible progress. I can't even beleive where we was 30 days ago. He has some short term memory loss and some mild tremors. He still needs a lot of physical therapy to get him to be able to walk to the restroom on his own. We will take all the progress we can get. We have prayed over this day to come, we are so blessed to have him doing as well as he is. He has also gained 15 lbs. So for all the people and family members dealing with this condition, there is hope!! I truly believe that God has shown us the power of prayer and hope. He is so good!!
    • Posted

      Michelle....that is great and so incredible!  I have never heard of anyone doing that much so quickly!  That took me 3 months.  Of course, I had no idea what to expect, I am just so thankful that I am still improving (albeit slowly....) every year, and it's been 5.  Yes, I too know that God and family prayer did so much!!  And thank you so much for keeping in touch! God bless!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.