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I am trying to find any groups that suport people who have been diagnosed with Central Pontine Myelinolysis?

February 14th, 2013

Two years ago my brother was admitted to the hospital for an electrolyte imbalance caused by many weeks of vomitting and dehydration. His sodium level on his admittance to the hospital was 96 and within a 36 hour time frame was increased to over 120. As a result of his treatment he now suffers from Central Pontine Mylenosis (CPM). He has struggled to learn to walk and talk again. He experiences issues with tremors that prevent him from writing, typing driving and feeding himself. He recently was also diagnosed with central sleep apnea as a direct result of CPM.

I am trying to find a support group for survivors of CPM, or anyone who has experienced this condition personally or know of someone who has CPM.

I have searched the web for support groups until my eyes are crossed.

Any help is greatly appreciated.

Has he gone to a sleep lab? I can only help you chip away the sleep thing. I use one of those CPAP thing nightly, now I am 61 years old and was diagnosed at 60. I feel like I am in my 40’s! True sleep is wonderful, my whole adult life I never had a good night’s sleep! I also had a knee twitch that kept my brain from going into REM stage of sleep. Thats where the eyes dart around, its like perfect sleep time, anyway I lived without it for 40+ years.

I hated going to the lab and did not enjoy the whole idea of it. The idea of having something poked up my noise was not comforting! I HATED IT! BUT MY WIFE MADE ME GO !!!!

The lab was tolerable, but the results are unbelieveable!

THE DARN MACHINE WORKS MIRACLES! SO … LIKE A SAVED SINNER, I AM HERE TO SPREAD THE WORD, TELL THE WORLD WHERE THEIR REDEMPTION MAY BE FOUND ( WELL MAYBE A LITTLE PUSHY )!

WISH YOU LUCK ON ALL OF YOUR PROBLEMS, BREATHING THROUGH THE NIGHT SERIOUSLY HAS RE-STARTED MY WHOLE PERSONAL LIFE!

HAVE A GOOD DAY.

APS

One Response

  1. A. P. Shoe Says:

    Has he gone to a sleep lab? I can only help you chip away the sleep thing. I use one of those CPAP thing nightly, now I am 61 years old and was diagnosed at 60. I feel like I am in my 40’s! True sleep is wonderful, my whole adult life I never had a good night’s sleep! I also had a knee twitch that kept my brain from going into REM stage of sleep. Thats where the eyes dart around, its like perfect sleep time, anyway I lived without it for 40+ years.

    I hated going to the lab and did not enjoy the whole idea of it. The idea of having something poked up my noise was not comforting! I HATED IT! BUT MY WIFE MADE ME GO !!!!

    The lab was tolerable, but the results are unbelieveable!

    THE DARN MACHINE WORKS MIRACLES! SO … LIKE A SAVED SINNER, I AM HERE TO SPREAD THE WORD, TELL THE WORLD WHERE THEIR REDEMPTION MAY BE FOUND ( WELL MAYBE A LITTLE PUSHY )!

    WISH YOU LUCK ON ALL OF YOUR PROBLEMS, BREATHING THROUGH THE NIGHT SERIOUSLY HAS RE-STARTED MY WHOLE PERSONAL LIFE!

    HAVE A GOOD DAY.

    APS
    References :

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