I don't have this disease, but my 88 year old father is currently being tested for this. He was driving and his mind was sharp until April 13 when he was hospitalized for low sodium. When he came home (he lives with me and my husband) I began to notice strange behavior. He would constantly ask me what he needed to do next--like he was lost, or his brain was stuck and he really could not figure out simple tasks. He had his first appointment with a neurologist on 05/18/2008. He had a CAT scan which did not reveal any signs of a stroke. He can have an MRI because he has a pacemaker. The doc was pretty certain he has cpm but did not discuss it with us at that time, He had dad come in for an EEG this past monday and he has another appointment on 06/22/09 to discuss the findings and prognosis. Frankly, I am scared. I have done some research and it does not look good. Can anyone help me?
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central pontine myelinolysis
- By bitsofglass
- Posted May 28, 2009 at 9:33 pm · 164 replies
- In My disease has no treatment
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- By djmtard
- Posted May 29, 2009 at 9:59 am
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OMG!!! I have cpm!! Read my "crazy but true story". My story was a little different however, I wasnt diagnoseduntil i was in a coma!!! What was his sodium level when tested? Did they ever give him sodium to get the level up? The MRI should have shown damage to his "Pons" Let me know...
- By bitsofglass
- Posted May 30, 2009 at 8:30 am
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he went in the hospital on 04/13/09 and I believe his sodium level was 114 (maybe lower) and they did give him sodium solution IV to raise the level. They were also giving him urea crystals(mixed with water) twice a day-he is still taking that. He can not have an MRI due to having a pacemaker. The neurologist said that if he could do an MRI, it would give a definite diagnosis, but he is going by our onfo, and a CAT scan. This is so scary and all I have read on CPM says that the brain damage can be long lasting.
- By djmtard
- Posted May 30, 2009 at 9:15 am
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It is long lasting. I still struggle every day. CPM is caused by getting sodium corrected to quickly. You should check into that. Does he have any trouble with walking or any limbs? If he does it is probably cpm. PT,OT and speech therapy does help.
- By bitsofglass
- Posted May 30, 2009 at 9:36 am
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He does not seem to be walking as well as before, maybe a little more stiff and sore, but he can still move around almost as well as before. His thinking skills are impaired. He can name the last four presidents, his birth year, and if you did not live with him 24/7, he could carry on a normal conversation with you. He just gets "stuck" with everyday tasks, He will ask me when he wakes up, "what do I do now" and I will have to go over his morning routine for him, at times I have to write it down. His short term memory has been greatly affected. He says he feels lost and is scared he will make a mistake with his everyday tasks. Based on your story, he is lucky that he was not affected more. Does it get worse, or is the damage complete and now the recovery
- By djmtard
- Posted May 30, 2009 at 9:49 am
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It will not get worse!!!! the damage is complete. I use a board on my fridge to help me through my day. My short term memory is also bad. I also have alot of trouble controling my limbs. I have tremors. I can walk but not very well. Just be patient with him... he will go through the mourning process...You can always ask me questions!!! I will help as much as i can!!!
- By WhataBreeze
- Posted May 31, 2009 at 11:54 am
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Good Morning All,
I remember some 7 years ago just after I was officially diagnosed. I had already started my research on CPM when I suddenly was greeted by a very kind gentleman in London, England who was an aero space engineer. Just by chance he to had recently been diagnosed with Central Pontine Myelinolysis. I wish I could describe the relationship both Bob and I had developed. We began hatting with each other everyday and all day on AOL instant messenger. We truly filled a huge gap that had been needing a filler so bad. Together, with Bob there and me here we suddenly had a great process working and truly coming to the aid of so many. Bob was always so stressed over his medical malpractice case that had been filed but in England things becomed processed in a very unfamiliar manner as one way or another, everything has a solid connection to the government.
Now since I began the conversation between djmtard and bits of glass it sure brings back those memories. I pray the two of you can begin to be there for one another. The one main difference between Bob and my chats is it appeared that we were so much more positive in or mannerisms not to mean anything is wrong or bad with yours but we really tried or best to find some positives in our negative. I can think back to the time it seemed like Bob and I in the "Myelin Disorder Forum," were taking on the entire "MS Forum," with the 100's that as a big team would continue to knock us around like we were "Red headed step children," making nothing but trouble which actually was all for fun.
The fact is that those who had other Myelin Diseases / Disorders were very kind to us who had no one to chat with. Those who acquire CPM usually have passed before even getting diagnosed. It's a very sad issue if by chance you are one of the 50 to 75% that pass away within the first 30 to 60 days. It sure seems that the attempt is truly there to get you in the ground prior to all the actual issues that lay baron to the Truth!
Believe it or not, I've just put together another medical team including my primary. (internist I pay extra so I'm assured to be seen or heard quickly) Then I found a sleep disorder specialist who can double as a Psychiatrist, a Neurologist, a Pulmonologist, a Pain specialist, a Gastroenterologist, etc. (I'm sure there are a few others but we can go on hold for a while.
In closing, those totally unfamiliar with CPM which is usually everyone, Those who are subject to connect with this disorder which truly is not extremely difficult to acquire do to the absolute facts of becoming an "Iatrogenic Disorder," (caused by error in treatment) Now post my seven plus years in CPM research, with not only other clinicians, patients and some of the best specialists in the world. Remember, it first recieved a name some 50 years ago. Friends, there is something "VERY WRONG GOING ON," in our world. I see these stories continue to repeat without ANY assistance by any of our worlds governing bodies whose direction in medicine has gone "NO Where." I consider myself very blessed to be here especially after viewing my MRI's. In closing for a second time, the statistics that are available to the public if and fact your outstanding at putting puzzles together filled my tank back up and off I went again. Be blessed you didn't have to hear my initial take off with this project. Imagine out of the clear blue your on your way to the lead U.S. Senator who happens to be an MD. Your notified of an appointment you now have with his senior health staff along with a few physicians from the Senator's home state. I'll leave it hear temporarilly. G-d Bless...
Franky (my boston terrier neuro service companion) and WhataBreeze (that's me)
- By djmtard
- Posted June 1, 2009 at 8:46 am
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I am VERY positive about this disease! I was told by my neurologist just last week "Write your own story" he doesn't know what is going to happen in my future. So that means it is up to me to set the bar! I set the bar very high for myself. always have. I consider myself lucky as well when i think about where i was! I shouldn't be here...God must have a plan because otherwise I wouldn't be here..My feeling is that he only gives us what we can handle!! I know this because alot of my friends would have given up, just stayed in the chair when told they wouldn't walk again...NOT me!! I proved them wrong! I will be there for "Bitsofglass" and anyone else that comes up with this disease...
- By WhataBreeze
- Posted June 1, 2009 at 10:11 am
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I have a good hunch this intelligent person above me (posting above) really got the message to what it takes to beat this disease/disorder of the Central Nervous System. Don't get me wrong, we all have our different symptoms with CPM (Central Pontine Myelinolysis) but I sure welcome any assistance when it comes to AWARENESS!!!
Just waiting almost 18 months for a diagnosis was enough but when the day comes that I can locate the right professional to help me put it all together, whether one person reads it or rather one million, I know I've given my all as I know that God is on our TEAM.
In closing, I decided on awareness because during my daily research when I first came upon the government statistics in regard to yearly CPM deaths.
This was followed by another government article in regard to how decisions were made when it came to research dollars that were alloted to, "Rare Disease and Disorder." At this time, knowing that I personally questioned the top informational doctors here in the United States and when the numbers were discussed, I'd certainly rather he explain them. I'm sorry but at some time when in fact that the facts come out, you will understand my reasoning.
The #1 way that any CPM victim can help themselves which is much more complete than all the meds we take is to always remember to keep a positive attitude along with learning to PACE yourself as best as possible. G-d Bless...
Franky & Breeze
- By djmtard
- Posted June 2, 2009 at 8:32 am
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I have just learned of another case of CPM!! This vibrant woman is currently in the "frozen state", but being to move her eyes and feet on command!! Lets all pray for her and hope for any recovery!!!!
- By WhataBreeze
- Posted June 3, 2009 at 9:22 am
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That frozen state as you mention above to the best of my knowledge and research is called, "The Locked - In Syndrome," which is a symptom of Central Pontine Myelinolysis. I have only read about it so I can't say for sure but if you remember back to March of 2005, all news of Terri Schiavo in Florida whose family was involved in the "Right To Die," issue with Ms. Schiavo's husband. It was said that she to had the Locked - In Syndrome.
I continue to pray for the day that this fifty years of unethical doings in regard to CPM and all other Rare Diseases that are treated similar have there day. G-d Bless...
Franky and Breeze
- By djmtard
- Posted June 3, 2009 at 9:28 pm
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Yes, that is what I meant. I spoke with her friend again today...She is still only able to move her toes and eyes. She does however, appear to be aware of her surroundings..I too pray that this is the last case of CPM that we here of!!!
- By WhataBreeze
- Posted June 4, 2009 at 9:06 am
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Good Morning,
Don't get me wrong but if she CAN move her toes then she is NOT locked-in. (per all I've read in 7 years) It really gives her a better chance. Only the eyes have some movement which is a means for communication.
Are you reading about her or ??? Take care....
Frank & Breeze
- By djmtard
- Posted June 4, 2009 at 9:37 am
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Her friend got in touch with me through "My Story". He had been researching this disease and mine was the closest to hers because I too spent 2 weeks "locked-In". He was most concerned about what she MAY know about what is going on...I explained that she is probably "aware" but "not aware". I guess I cried alot when in that state. I had people that I hadn't seen for months or years coming to visit...And thinking back, I know I knew on some level why they were there...My husband said they were there to say goodbye...She is currently at Bards Jewish Hospital in St. Louis. She was airlifted there from Alabama...
- By WhataBreeze
- Posted June 5, 2009 at 10:23 am
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Good Morning:
Please help me with understanding your posting above. You state that this girl was airlifted from her home/hospital in Alabama to Barnes Jewish Hospital in St. Louis, Mo. In regard to what you stated your husband said, "They (girls friends) were there to say good bye." Was this event all just recently? I don't know about you but as I said before, I'll continue to remain as positive as I can. Negativity does not fit in any way to be the best I can be under all these directives we run into as a survivor of Central Pontine Myelinolysis.
I'm not sure if your personally aware but Barnes Jewish Hospital in St. Louis, Mo. also includes Washington University in St. Louis. Fact is they are one of the finest medical schools in the U.S. In total I think they are ranked #12 but when the separate specialties get listed, they are #8 in the Neurosciences and Neurology.
I have always felt that with correct communication and the right Team working together, "your possibilities truly have the chances needed to assist you along with God's goodness as well as prayer. G-d Bless...
Franky and Breeze
- By djmtard
- Posted June 6, 2009 at 1:06 pm
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Yes, she was airlifted from Alabama to Barnes in St Louis...And yes, My friends and family came to say "Good Bye" last fall when this happened to me. And YES, I was "Locked-In". My husband was told by my Doctors that I probably wouldn't live!! I was on a ventilator and feeding tube. I do believe this woman IS in the right place where she can get the help she needs!! I pray for her nightly!! D
- By djmtard
- Posted June 6, 2009 at 3:16 pm
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To Breeze; You keep mentioning negativity in our discussions...I am NOT negative about my disease! I am realistic. This disease has changed EVERY part of my life!! I was VERY active, fit and spent all my free time with my children playing! I worked in a field FULL of negativity. I worked with adults with Developmental and Mental diagnoses. It was MY job to make their lives more "normal". Also to help their families cope...I have always been a positive person!! I don't believe our disabilities define us. How WE act defines us...If we come off angry with the world, that is how the world will define ALL disabled people! In my work we spent all of our time trying NOT to let our clients be defined by their disability!! Just because you are disabled doesn't give you the right to judge others actions! My way of dealing with MY disease is to deal with it honestly! That means NO I will not sugar coat what people will go through with this disease! It is what it is...A terrible disease with pain and suffering for all involved. When my husband told me that people were there to say goodbye, he was trying to push me to NOT give up! And I didn't!! I am here today because of my desire to be there for my children while they grow up!! I don't want people to forget how aweful it is for the families of people with this disease! I will continue to speak of it honestly and if that comes off as negative then so be it...This disease doesn't care what your life was and doesn't care how it effects your family!! Unfortunately it IS caused by medical mistakes!! I will not sit by idlely and watch as more and more people are diagnosed with a disease that CAN be prevented! Yes, I am angry; with the doctors who caused this for me and for everyone else who needlessly gets this disease! Sorry to be so blunt, Yours truly, D
- By WhataBreeze
- Posted June 6, 2009 at 10:39 pm
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Hi D...
Talk about blunt, I wish you were even more blunt. Remember, I've been at this for seven years now. D, my mistake is I should of really cut loose on this entire issue five years ago. As stated, everyone acquires their own pattern of symptoms. To be point blank honest, but remember it's still by my opinion. As the research started, the magic word continued to be ALCOHOL no matter which route you took for cause. Who ever thought there would ever be the tobacco/nicotine issues. Just slip that out and try the alcohol as a replacement.
Everything you mentioned as far as the problems is 100% correct. D, a few days ago I discussed life and death with a fine doctor who has been in all areas of psychiatry, neurology, psychology, physiology, pathology and get this, add forensics. Let's put it this way. What was said to me is going to be very hard to accept especially when the issue of fault is such a game with those who are responsible in the first place.
D, again I appreciate your entire verbiage in your posting above. It's a "CRYING SHAME," that it should take one of us to be this much involved in bringing this factfull truth to the public. As God continues to bless us with strength to continue in the directives to fix a disease that we are strictly being used only to be a display for the rest of the world.
"The Hardest Thing In Seeing Reality Is How To Accept It." My best to you and the 100's of thousands who daily have to do as we do. Wait for illness to strike. Somebody will bust this wide open. I sure hope it doesn't have to be the plaintiff. G-d Bless....
Franky and Breeze
- By bitsofglass
- Posted June 9, 2009 at 8:03 pm
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Hey D
We have had some good days and some bad since my last post. Just when I think that my father is getting better, he has a bad day. I think that the most frustrating part is watching him become so frustrated about not being able to "figure things out". I do see some of his sense of humor coming back and this is a good thing. Will his self confidence return? He seems to be afraid that he will make a mistake in his daily routine that will cause him harm. We have an appointment with the neurologist on 06/22/2009 to discuss results of the EEG. I am so angry that this could have been prevented. Why is it that all doctors are not aware of the dangers of raising the sodium levels to fast. I am wondering if this happens more often that not and no one is aware that it is cpm. For Breeze, I am trying not to be negative, but I am mad as hell. Pray that my father's recovery will be speedy, or at least where he can feel he is making progress. What is your story Breeze? What happened to you and how fast did you recover.
- By djmtard
- Posted June 9, 2009 at 10:06 pm
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I'm glad to here your dad is doing better...As for his self confidence...Well I still struggle with that daily. Some days are better than others. Doctors are aware of this but they "learn" about it in med school and then it is something most of them never encounnter. Please keep me up to date. Thanks, D
- By UrsaBear
- Posted June 11, 2009 at 11:24 pm
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I also have been diagnosed with CPM. The date was October 5, 2003. I had been hospitalized for seizures (I have a seizure disorder) and the hospital treated me for hyponatremia while I was there. Well that is the day I almost died, and it wasn't because of my seizure disorder. Come to find out that the hospital "jumped the gun" and raised my serum sodium level too fast intravenously. I fell into a coma for 2 days before regaining consciousness. Then after 3 weeks of not being to swallow food, walk without assistance or speak an audible word, they chose to put me in a nursing home--at the age of 39! Well that was pretty much the kick-in-the-butt I needed to put up a fight--literally (they thought I wasn't, or couldn't, pay attention-ha!). And then there was the day that my son called me from Bosnia, where he was stationed in the Army. That was the other incentive I needed to get better. After summoning the strength to do the minimum of what it took to satisfy the doctors, they released me to go home. That is where I worked on my own physical therapy and later insisted my health insurance pay for speech therapy. Unfortunately, that should have been my first priority because to this day my dysarthria is the only obvious sign of CPM.
In a way CPM changed my life for the better. Sure, I was no longer the chipper little worker who made excellent money as a waitress and bartender in Southern California.
As to keep busy and find a little self respect, I went back to school. College at age 41? Well it was the best decision of my life. I now have an Associates degree in Behavioral and Social Sciences. I am currently a Health Sciences major at a California State University, with an emphasis on Health Education.
This has not been easy, since my speech impediment requires me to use augmentative devices and laptop programs to communicate to "the masses", but it is better than sitting around at home and feeling sorry for myself. I tried that for a few months---it doesn't work!
So what I suggest to anybody who suffers from CPM, don't give up. Baby steps. Go at your own pace and don't be so hard on yourself.
For a while I got frustrated by the sheer number of health professionals, and even doctors, who had no idea what this disorder was. So I made it a habit of printing out and carrying around the best summary of this condition that I could find. Now I just tell them "I have CPM. Look it up!" Lately, I have better things to worry about. I do know that we are the lucky few who have lived to tell our story.
So in closing please remember, "when one door closes, another will open up," and that is life!!
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