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
Darren6969 elaine04862
Posted
Hi Elaine, my name is Darren, I hope your son is doing better. I got CPM at the beginning of 2016. It is hard thing to go thru and I can't imagine what my family went thru too. I can go into more info if you want. PS may I ask what was your sons sodium level. at the beginning of all this?
Rick1957 elaine04862
Posted
Everything I've read the past 10 years only two things cause CPM. Excessive alcohol use and Rapid sodium changes in the blood. Mine was calls due to the rapid infusion of saline post-surgery when a hematoma burst and I lost 3 units of blood into my thoracic cavity. The first year was the hardest as I learned to walk and speak again and after 10 years I still struggle with swallowing and extensive pain as well as he robbed the sea period I had a pain pump installed in my abdomen that administers Dilaudid into my spine to control the headaches. I also take Ativan and Lyrica to manage the neuropathy Tremors in see the seizure. Be patient and pray as you have a long road ahead is your son recovers. Feel free to ask me any questions and so I just celebrated my 10-year anniversary struggling with this disease.
frank25628 elaine04862
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hello, frank here. sounds like your son is going thru what i did. i stayed in hospital for 9 months. it's been 11 years of 2-4 hrs a day. balance still sucks. improvement is slow. hang in there
alison_74676 elaine04862
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Such a difficult conditions for anyone to be able to know how long it will take to recover, or if they even will. I was diagnosed with CP in August 2014. It's been a long road to recovery, and I am still not able to do everything for myself. From what I've researched myself,as it's a condition you get from treatment for other problems. Until they realise you are likely suffering from lockin -syndrome? And screaming inside. The faster one gets intensive physio the better the results may be.Still seems a rather unrecognised condition to me. Also seems to stem from misconduct, being given too much sodium too quickly. And where can you go if you went to hospital from too much drink in the first place. Still I'm alive and that, I believe was down to having a strong will to survive and get as well as I could . So anyone out there with loved ones with this stay strong and believe,where there life there hope . You are in my thoughts xx
lorrie62957 elaine04862
Posted
Hello Elaine
I know I'm a stranger, but was recently diagnosed with CPM. I can't seem to get an answer from my doctor but it happened when I was hospitalized for emergency gall bladder surgery based upon lab records.
I'm thinking about getting an attorney but don't want to waste time. I'd be interested in your experience.
Thanks in advance for any information you can provide.
gary44503 elaine04862
Posted
Hi, is anyone still out there talking about Cpm. My name is Gary. About 2 years ago I had Cpm.6 six months in nursing homes the whole nine yards. I'm 53 and still having a hard time. I'm a emotional wreck, still use a cane, and have so much nerve damage I can't even explain. Anyways since this happened I fell so alone. I'm married and have an 18 year old daughter and for the most part they do what they can. I guess I am looking for people to talk to that might understand what I'm going through. Because at this point I think the people that could understand is someone that had Cpm. Gary
dudley1978 gary44503
Posted
Hi Gary and welcome , I'm Dudley age 39 and suffered cpm 10 year ago and still struggle I have actually been too a fatigue management course today I know talking to other help massively so I will always try and help with whatever questions you have . I have tried to do some research this year about cpm and found very little medical staff have seen ppl who have suffered and we are all different, my systems massively came back last year when I was diagnosed with bowel cancer . But now I have a stoma and that and cancer returning is always on my mind , I'm on twitter dudley197 . I'm just trying to find out at the moment if it was the hospital that gave me the cpm because that seems the most common, but hospital staff don't want you to know that . Anything I can halp with just give me a msg
Many thanks
gary44503 dudley1978
Posted
Hi Dudley, Thanks for getting back I guess I'm a rookie at this. I had some friends before this but it's like nobody comes around anymore. I don't know if because I walk funny or I'm alitte slower then before I don't know. My licience was taken so I have to depend on my wife I just fell so useless.zYa I know boo hoo,I just got learn to get over it. But it seems like I fight that everyday! I know my sodium was tampered with. The lawyer I had told me that the hospital covered it up to good and I had no cases. But I know the truth. Take care
Cleong gary44503
Posted
My father now being diagnosed for CPM . Will like to get some advise from you. Does your doctor prescribe any supplement for your diet to help for the recovery process. Coz I could not get information to help my dad. He is 74 yrs old very active guy but due to hyponatremia currently he is at hospital for 2 weeks.
gary44503 Cleong
Posted
Hi Cleong, I'm sorry to hear about your dad. Unfortunitly Doctors do not know much about the condition and have been very little help to me! I do take multi vitamin(centrum for seniors) that helps. My diet is very screwed up..My wife of 25 years left me because of my emotional issues but my daughter is still with me. You have to watch the diet closely. I love neat but I can hardly eat it anymore and I go long periods of time without eating. My best advice.right now is do research on the condition and stay in contact with me or others that have survived it which there are not many of us. There is soo much more to deal with which I deal with daily. I wish you and your dad the best. If you need anything let me know, Gary, my e-mail is
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Cleong elaine04862
Posted
Can u shine me some light what I can do to help my dad. He is now 2week in hospital lost ability to talk and swallow and weak.
gary44503 Cleong
Posted
HI Cloeng, hang in there. At one time I could not talk for about 2 months and was feed though my stomach cause I could not eat. It is a long hard road if survived. Right now I give you and you're dad my best. Gary
gary44503
Posted
If he is anything like I was he understands what's going on around him. All you can do at this time is be there!
joe64679 elaine04862
Posted
Hello everyone,
Has anyone tried acupuncture and/or cupping for the muscle spacicity caused by CPM? I am trying it now here in Houston along with Tia Chi (I've been wanting to do Tia Chi for about 3 years) for more fluid movements instead of looking like a robot from 1980. HaHa! I would appreciate any input.
gary44503 joe64679
Posted
Cleong joe64679
Posted
Yes my dad is doing acupuncture to help blood circulation to his brain according to the master. It helps him to relax. Usually during the session he will fall asleep easily.
But now he still have a little bit of tip toe.
Cleong joe64679
Posted
Tai Chi is good don't worry of your robot moves.. slowly it will help u to improve your breathing rhythm and makes your muscle stronger as it will get more oxygen from better breathing. I told my dad the same. During his Physiotherapy session i will encourage him to take deep breath as it helps to draw in more oxygen and send to all over his body.
I have use all my knowledge to explain to him and he understand.. but sometimes he will behave like a kid..
For your muscle problem.. try to do more stretching and also massage on the tendons. i do that for my dad daily when i am free. i see less shaking now.
joe64679 Cleong
Posted
Thanks for responding!
joe64679 gary44503
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I sometimes have tingling when trying something new. My doctor said it is the nerves and they are waking up. Most of my hurtle now is my arms and hands. I also have a tremor in my arms and hands.
I told my physical therapist I could get a job as an extra on The Walking Dead. HaHa!
gary44503 joe64679
Posted
Joe, people have told me acupuncture works. Cleong has told me others but it's not available here and I couldn't afford it anyways. When this happened to me I was uninsured. The tingling on m has taken over my whole body along with pain unbearably pain. I am on painkillers but no they are fitting me off! I have tried everything I can afford and now thing else workshop oh well. Hopefully the tingling won't spread for you. Hey if you can find a job as a extra on walking dead I am in. We don't even have to act. Gary
Cleong joe64679
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Acu seems working for my dad now he has less tremor and i have stop other of his medication such as Mardorpa.