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DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 8/10/2010 12:56 PM (GMT -6)   
Hi All,
I am looking for some updates as I have been sick and off the board until just recently? Now have SPMS. Balance, walking, writing, hearing, night sight are not so great. Sense of humour, love of family,  love of life long friends and love of my 3 dogs are all still very much intact!! 
 
I have missed posting here and all your informative news. How is everyone doing? Where is Uppitycats? I haven't seen her at all. I hope she is alright. Who are the admin. people and moderators now? Kimber and Gretchen1? What does everyone think of the liberation treatment approach? Different stages of progression of MS within the established catagories RRMS, SPMS and PPMS
 
I am now on permanent disablity ccp pension and  I am now away from the pollution of the industrial city that  I once lived in. Now,  I live in farm country in the rolling hills of New Brunswick. I love it here and it is good for my soul.
 
Hope you are all doing well. Hope to hear from you all and how you are doing.
 
Dale tongue

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 8/10/2010 5:46 PM (GMT -6)   
Hey Dale,
 
It sort of died here.  No one posts here much anymore.  Mostly we get "do I have MS?" or "I am sure I have MS but my doctor won't diagnose me even though I have no lesions.....what do I do?"  We still get a lot of "go see an LLMD, you probably have lyme disease." 
 
I stopped moderating.......this board is not moderated anymore.  Most people have gone to MS world or MS refugees.  I quit because people were upset with me.  I wasn't responding as they wanted me to or I wasn't running the chat in a certain way.  I do read posts and I sometimes respond but not like I used to. 
 
New Brunswick huh?  That must be beautiful.  I am fascinated by the liberation (CCSVI) stuff.  I think it could be a real treatment and I can't wait for it to become available for everyone.  If you ever want to talk, you can always email me. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/18/2010 7:35 PM (GMT -6)   
Hi Dale,
 
   Just wanted to pop on and say hi to you!! I read sometimes here but rarely post anymore.  I stopped modding years ago, it became too emotionally exhausting and I had personal issues at the time as well.   You sound very happy and I'm so glad to hear that.  Please email me sometime, we can catch up! 
 
Kimber

odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted Yesterday 7:42 AM (GMT -6)   
 Balance, walking, writing, hearing, night sight are not so great.
 
oh, that is me. got dx w/secondary recently and finding it a new disease. double vision comes out of nowhere, ants walking on good leg & arm. hope you're okay.  linda

DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted Today 11:16 PM (GMT -6)   
Nice to hear from you all. Thanks for your support and info on the site. Leg pain, spasm, and rigidity now rule my life. However I have ms and I refuse to let to let it own me or let it define who and what I am or what I may beca me.
Hope we can be a support for each other.

Dale

sandfly
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 8/27/2010 9:01 AM (GMT -6)   
DFC said...
Nice to hear from you all. Thanks for your support and info on the site. Leg pain, spasm, and rigidity now rule my life. However I have ms and I refuse to let to let it own me or let it define who and what I am or what I may beca me.
Hope we can be a support for each other.

Dale
 
My thoughts exactly DFC.  I belong to a support group in our city and it does wonders to have the meetings and get togethers. Everyone shares their different experiences and it helps to know we aren't alone. I hope this forum starts picking up and we can keep on supporting each other.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/12/2010 9:10 AM (GMT -6)   
I have never heard of the CCSVI. I will look it up? What are your opinions on this form of treatment? I haven't been dx yet but the drs are certain that I fall somewhere between Lupus and MS, or both. I am just about willing to try anything to help with the pain and progression of whatever it is that I have.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/12/2010 9:12 AM (GMT -6)   
Gretchen please remember that you can't please everyone all the time. And of course you must put your boundaries up because after all you have your own set of issues, but everything that I have read from you is fine. I have gotten insight on several things from your responses. Take care of yourself.

DFC it is good that you are back... and happy with your new home.....

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/12/2010 9:28 AM (GMT -6)   
CCSVI (chronic cerebro-spinal venous insuffeciency).  This is a theory that MS is caused or constantly exacerabated by the condition of stenotic neck veins.  Stenotic neck veins cause blood to pool in the capillaries of the brain.  Tiny amounts of blood leak from the capillaries and end up directly on the brain.  Blood directly on brain tissue may be causing an auto-immune response or it could just be that (as in stroke or brain bleed) brain tissue dies from direct blood contact. 
 
There is a huge amount of controversy surrounding CCSVI.  HUGE amounts of money are made from current MS meds.  Some are sure that this is why CCSVI is not being fast tracked as a possible treatment...........it would cost pharmaceutical companies millions in profits. 
 
To receive an evaluation and treatment for CCSVI, you have to look far and wide  for an interventional radiologist that is willing to do this.  You will probably pay cash.  The going cost for diagnosis and treatment is about 10 K. 
 
I am waiting and watching with great interest!

Dave_NC
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 9/16/2010 6:27 AM (GMT -6)   
jdrea said...
I have never heard of the CCSVI. I will look it up? What are your opinions on this form of treatment? I haven't been dx yet but the drs are certain that I fall somewhere between Lupus and MS, or both. I am just about willing to try anything to help with the pain and progression of whatever it is that I have.


Best overall resource on the web is ccsvi.org. You will not be disappointed in your time spent researching it. smilewinkgrin

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 9/16/2010 6:58 AM (GMT -6)   
Gretchen,
 
very nice summry of CCSVI !

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 725
   Posted 9/17/2010 9:49 PM (GMT -6)   
Gretchen, I know I am new here but I wanted to say that I, for one, really appreciated that you were there when I posted.  I was so confused & truly took everything you said to heart.  Thank you for answering my post & for your support.  Some of us really need someone like you to help us.  I am still undx'd but will be going to the Rhuemy on the 28th of this month.  I was referred to her by my GP & my Nerologist.  I sent in my paperwork for Social Security & am slowly moving forward. 
 
Hi to all here, I hope we can support each other.  I am terrible about being on top of things like this when I am really sick but I will certainly try harder.
 
Hugs, Denise
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