Hello Everyone

Yes it's been a l o n g time since many of us have chatted. I've continued to go through hell to find high water. Sorry to admit CPM is " STILL " being hid under the carpet. Franky, my Boston Terrier neuro service companion will be 7 years old in January. Now that my own CNS has been blown out all the doctors still can't figure out why I'm still alive!!! G-d has more work for me and I will continue to assist. Wish I could go on but my battery (the one which controls the nerves in my brain stem) needs a charge or let's call it a nap for the time being.

Oh My, just thinking back to the very beginning when I was taking my advocating trips to DC. They thought I was a gone. NOPE, my work with CENTRAL PONTINE MYELINOLYSIS is not complete so we march on my trusty friends.

G-d Bless....
Franky & Breeze

There are a good bunch of folks here, some of whom you mite be familiar with? Under the PN forum
http://neurotalk.psychcentral.com/forum20.html
Since you are posting? I am assuming that you are holding your own or Franky has learned to type!
I am glad that you are still around to kick some Backsides about what all CPM
IS and how we mite become subject to it! ?
Just know I've missed you around the 'block' and am truly glad you are here!
Hugs and hope and good things SOON FOR YOU! 's - j

To Dahlek, One Of A Kind A True Blessing:

The day "WILL COME," that those of us who have acquired this iatrogenic (ERROR of or in Treatment) Neurological Disorder/Disease along with others whom like myself carry the spirit to LIVE while assisting others. CENTRAL PONTINE MYELINOLYSIS will be conquered "ONLY WITH TEAMWORK."

Since the very first day I met Dahlek, she has been there for me. Oh what a blessing she or those like her can be. Eight years I've learned to live with this chronic way in life. Many are unaware, but the last couple years have been spent learning how to live on when another CPM symptom attacks the CNS. (central nervous system) REMEMBER, teamwork is a must, G-d Bless...

Franky (boston terrier, neuro service companion) and Breeze, (often simulated but never duplicated)

No, you are one of MY HEROES!
You make all of my problems seem minute by comparision. But? You are far braver about it than I've ever been.
But I Still want to weild a 2/x4"X8' hither and yon on occasion? For You or for me.....


YOU AND FRANKIE ARE THE BESTEST! [/B]

- j

It's been a while, and I'm afraid many who knew you a while ago, don't remember you now... Keep it up! Keep educating HERE and tell folks things to do to help or avoid CPM!
We can either do this: ? or this:! We've also got a great 'smilies' selection to choose from..... I've known some folks here who have composed whole posts with them!
Also? Have you got any new Frankie Pics? I for one would love to see how he's 'maturing' - Such a super watch-dog! Be sure to post pics in the pets forum as well:
http://neurotalk.psychcentral.com/forum62.html
Don't be shy anywhere? You've been thru more than most of us! We need to LEARN from you and make folks aware!
Hugs as always! !!!!!!!!!! - j

PS there is a sub forum at the top of the pets/animals forum about service animals [cats, dogs, you name it?] I believe lots of folks could benefit from your experiences w/getting Frankie 'certified' or the like. He CERTAINLY DOES HIS JOB WELL!

Hello,

I was recently diagnosed with CPM after 2 years and multiple specialists. I have been looking for some sort of support group or foundation about the disease, but I couldn't find any.

My symptoms used to be only on one side of my body, but now they are over my entire body. One puzzling thing is that we (my doctors and I) can't figure out how I got it. I woke up early one morning with half of my body paralyzed. Since then I have regained most of the function, but there is some personal damage. I typically have pain, numbness and fatigue, as well as some other weird symptoms. I have more mris in a few weeks, of by bread, head and spine. I also have an appointment for an EEG.

Is there anyway to learn what I can expect from this disease? How will it progress and will it kill me?

Thanks!

Hi
My mom was just diagnosed with CPM and they suspect the attack happened in the fall of last year. Unlike the odd story I have been able to find her condition has gradually progressed, she did not wake up one morning with paralysis. Up until her diagnosis we were expecting to hear that she had a form of progressive MS.

We thought the diagnosis of CPM was good news in that we were told that there would be no further attacks that the damage was done and that she would gradually get better. Unfortunately, this is not what we are seeing she continues week by week to digress to the point now where she is barely able to weight bare, has little to no movement in her arms and legs and is exhausted most of the time. She is currently in a rehab center but my dad informed me today he thinks on Thursday they are going to tell him to either take her home or find a nursing home for her as she is not able to to physio. (she's only 63)

I can find so little on the internet as to what we can expect. Is she going to get worse because her body is trying to "rewire" - will she eventually get better??

Please anyone with any kind of personal experiance with this rare disorder your insight would be a god send to me right now.. even if it's not what I want to hear.

Thanks
Monique

I'm sorry, but I only recently became aware of your problems, and did a direct e-mail to Breeze to highlight your concerns.
He IS a super person, and if he can, he WILL Be here and soon.
And, he's got heaps of information to share with you that can help you live and cope with what you have.
Bless you all for what all you are going through! My heart is with you and know that it makes my own neuro problems seem small by comparision.
Hugs and hope! 's !! - j

I would love to chat with you regarding Central Pontine Myelinoysis. I am new to this and feel so alone. I am in pain alot and feel like I am sleeping my life away. Dr. says this is what I have but can not tell me how I got it and they say I should have no pain. I thank goodness for my family doctor as she is heping me manage my pain. where do I go from here?

Welcome to NeuroTalk:

This is an older thread, and the original poster hasn't been here for quite a while. You may not get an answer because of that.