What a Breeze


#1

I am a SURVIVOR of Central Pontine Myelinolysis, an acquired toxic demyelination disorder said to be a neuromuscular disease of the central nervous system. This disease came to the forefront in 1959 and has continuously been very quietly withheld from the publc world wide. Recently I’ve founded the “CPM Awareness Foundation.” Along with my own chronic issues, I have found my best therapy in doing my best assisting other CPM victims or their families as most CPM victims that live or in need of help in many areas. Now as a CPM survivor, layman advocate and founder I’ve been involved in many scenerios bringing “CPM Awareness” to many Government Institutes along with many influential organizations.

It is stated in all imformation that there is no cure currently available which tends to be both true and false. Central Pontine Mylinolysis is what is called an Iatrogenic disease meaning it is acquired by, “Error of Treatment.”


How did you get this disease? What are it’s symptoms for you?


#2

How did they find it and diagnose it?what are your symptoms?I think its great you started a group.I have done alot of research and have never seen this name,its great you are spreading the word.Best Wishes,cassy

[ms-cpt3235@lists.careplace.com] wrote:


#3

Hi Dawn and Cass,

Your curiosity and questions are much appreciated. This is my very first posting here at careplace. The closest forum here for me to post in will be MS. I have been researching CPM (Central Pontine Myelinolysis since my diagnosis was officially made in 2003 yet I acquired it in 2002. In fact on a few other Forums that I’ve been posting at have a Myelin Disorder Forum right by the MS Forum. I usually try my best not to mix up my “MS First Cousins,” so to say. In regards to demyelination disorders, you either have MS or your considered exactly what those in the “World of Medicine and Health Care,” have labed an “Orphan.” I will leave a few links that give a good amount of information. Not until just a few months ago, CPM had very little validation but finally the wake up call came. I’ve had the opportunity to assist diffrent areas at NIH. (National Institutes of Health) If you wish and time permits, pull up WhataBreeze and either Myelinolysis or Central pontine Myelinolysis on Google or any other search engine. I started the CPM Awareness Foundation and I’m presently working on an informational site that will be run by those of us with CPM.

http://www.ninds.nih.gov/disorders./central_pontine_myelinolysis.htm

http://www.emedicine.com/neuro/topic50.htm

Look forward to continuing this Thread as the cure at this time is Awareness! G-d Bless…

Franky and Breeze
(Franky is my three year old Boston Terrier who is now classifiend a “Neuro Service Companion.”)

Note: Cass, I accidently hit your report tab by accident but hopefully its not to hard to see your posting was fine as well as appreciated.