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Central Pontine Myelinolysis...
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Jondils posted:
My dad was diagnosed with Central Pontine Myelinolysis last month. At the time he was experiencing paralysis from the neck down and the neurologist told me, " It is unfortunate that your father did not pass when the stroke occured." The problem I have is that he is 65 years old he doesn't have any existing medical conditions other than high blood pressure. He doesn't drink, doesn't smoke, is not overweight, and has mainly only had one major medical problem in his life which was diverticulitus in the mid 90's. By all my research it seems that most people if not all diagnosed with this have had other existing conditions, mainly alchoholism. Any idea of what may have caused this, any suggestions on better understanding this, or why the neurologist would have told me that he has no hope to live seeing as he is moving EVERY part of his body now, eating regular food, talking, and seemingly recovering after I almost pulled the plug?
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Richard C Senelick, MD responded:
It's sounds like you have done your homework and are quite knowledgeable on CPM. Your question does not tell us whether or not your father had a low sodium level. This is the most common cause of CPM and may be associated with alcoholism and other conditions. CPM can occur, on rare occasions, without any obvious source.

The fact that your father improved does not eliminate the diagnosis of CPM. Approximately 1/3 of patients will recover. Did the doctors order an MRI scan that showed classic findings of CPM? The good news is that your father is doing well and has beat the odds. You may never know what caused his symptoms. Now that he has improved, you may want to visit with the doctor who made the diagnosis and see if they still believe he had CPM?

Finally, studies have shown that we are wrong approximately 30% of the time trying to predict the outcome of critically ill patients in the intensive care unit. It is always a balancing act in trying to provide families with the most accurate information and being realistically optimistic.

I'm glad things seem to be headed in the right direction and hope that your father receiving first-class rehabilitation.

Good luck.
After your stroke you may be experiencing a new normal, but remember what George Eliot said- It is never too late to be what you might have been. You still can achieve new goals.
 
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smartinek responded:
I developed EPM in June 2011.

I've created a blog regarding it: whatishyponatremia.org

I highly recommend researching it.
It contains information regarding medical research. Information about what's happened to me and how it's impacted my life, and it includes what others are experiencing with it.

It talks about the different causes, the most common hyponatremia, but also cardiac disease, certain medications like BP meds, antidepressants, etc, renal issues and liver problems.

Most often CPM/EPM is caused by the incorrect treatment of hyponatremia. That said, if that's what happened to him, his doctors might hope that he dies before you find out more about it.

Depending on the severity of symptoms, he might get better or he might get worse. There's a significant risk of death during the first 3 months...as the weeks go by, the risk for death decreases.

However, symptoms can also continue to evolve for years after the initial injury. (This is debated by some doctors, but my research has found that after the initial injury, as the brain heals, more damage can occur which causes later onset symptoms.)

It is typically broken down that 1/3 of people die initially, 1/3 get better to some degree, and 1/3 remain with ongoing disabilities.

Please check out my blog for over 40 posts of medical information regarding it. I try to keep the medical issues separate from my more personal story with it, so that you can use it as a research tool.

I wish him the best of luck...oh, also you can talk to additional people who have it on Inspire.com...Inspire is an online support group for everything from eating disorders to extremely rare diseases and injuries, like CPM/EPM. Do a search on CPM on Inspire's website, and you'll find posts from people who have it.

Best of Luck,

Sarah M.
 
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lillykinston replied to Richard C Senelick, MD's response:
Dr. Senelick:

My sister was diagnosed with CPM. She has no quality of life. Is there a cure for this disease here or anywhere in the world. She is ready to throw in the towel so to speak. So far, we have not had any success finding someone knowledgeable in this field. She is in constant pain 24/7. I am reaching out to you due to your knowledge that you have had patients with CPM. Can you shed some light at the end of the tunnel for her? Where can we go for help, and whom can we see? Please help in any way you can. Thank you.
 
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Richard C Senelick, MD replied to lillykinston's response:
I think most of the information in the previous replies would apply to your sister. It is difficult to give advice over the Internet in very complicated patients. CPM patients have severe disabilities and the pain can be coming from a variety of areas. Have you considered having her admitted to an Inpatient Rehabilitation Hospital for a few weeks where specialists could sort through her problems and see what might be done to improve her situation? I do not mean a nursing home that calls itself a Rehabilitation Facility, but a real Rehabilitation Hospital where the doctors and therapists would evaluate her and she would have access to multiple specialists. You can contact a Rehabilitation Hospital in your area or ask her primary care doctor. They will usually come to wherever she is to do an initial evaluation and see if she is a candidate. Good Luck.
After your stroke you may be experiencing a new normal, but remember what George Eliot said- It is never too late to be what you might have been. You still can achieve new goals.


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Richard C. Senelick M.D. is a physician specializing in both neurology and the subspecialty of neurorehabilitation. He did his undergraduate and medic...More

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