ccsvi.. I want to cry

    • Anonymous
      April 20, 2010 at 10:41 pm

      Hi Everyone.. I have just finished reading an article in MACLEAN’S magazine ( a canadian publication) On MS and the miracle cure for MS. Tho offically this is still experimental early findings are positive.A year ago I had the privelige of being by a friends side when she passed away after an 18 yr battle with MS she was 42. I hope and pray that this is the answer for people who suffer with this disease. As I was reading personal accounts of people who have been helped with this procedure I can not help but feel even more helpless about the disease we are fighting.It is hard sometimes not to despair. Sometimes I feell soo desperate. When will researchers do more for us?? Maybe if they cure MS they will move on to gbs and cidp and other orphan diseases. In the course of my disease I have come to the point that I can no longer tolerate the ivig.. pe is not offered in the community.. I want to o the sub ig but it is not funded ( but I will fight tooth and nail for it ) I aam frustrated as I need to get back to work to feed my kids… If they can cure ms then maybe there is hope for us!!

    • Anonymous
      April 21, 2010 at 10:29 am

      Thank you for your post. My daughter is 3 years old and has cidp so you can imagine how I feel about a cure. I am sorry about the ivig. We love it and consider it liquid gold. Can you tell us a little bit about the article. There is a christian group that I love called FFH and the lead person for the group has MS.

    • Anonymous
      April 21, 2010 at 12:35 pm

      Hopalong interesting thread to me as I have MS (hubby has CIDP). I was just in for my annual check up at the MS clinic and dicussed the Italian study on ccsvi. Unfortunately he had no control group so the study is viewed with interest, but other researchers are going to have to repeat everything before anything will come of his research. Seemingly it all goes back to the Italian discovering iron plaques in the brain of deceased people with MS. Since his wife has MS and he is a radiologist he had access to resources and he scanned his wife’s neck veins and found them blocked which led to her having them cleared with major improvement happening for her. Then he started imaging other MS patients. Interesting things happening. I am going for iron levels on Friday which will be fascinating to me if I have increased levels.

    • Anonymous
      April 21, 2010 at 9:39 pm

      Hi Sonia,

      Although I don’t have CIDP, the residuals from GBS are giving me the blues. I want to cry right along with you. 🙁 However, we can only pray that someone will someday (hopefully soon) pay more attention and providing funding to provide those with CIDP and those with GBS residuals a better quality of life.

      Hang in there and take care,


    • Anonymous
      April 21, 2010 at 10:00 pm

      the research of other conditions.

      While we suffer from ‘demelyination’? It is demeyelination of a different part of the body…ergo..we are apples and they are oranges. The processes are SIMILAR? But the effects are equally different yet devastating. Face it? The researchers and the docs JUST DO NOT KNOW! It frustrates me to the nth degree, but that is where we are at in this world.

      Be thankful that the MS researchers are doing their thing? Because w/o them? We mite not be any wiser than we were 20 years ago about nerves and their diseases. And also thank diabetics for their advocacy. We are such a small % of the neuro universe that it often takes us years to get diagnosed! [MS demeyelination is in the BRAIN, whereas we’ve got it everywhere else?]

      We must appreciate those others with other issues and then learn from them how to go forward about advocacy education and information. The key is INFORMING PHYSICIANS? I don’t have a clue how to do this? But that is a starting point and also a life saving point! For some.

      IF there were ‘miracle cures’? They would have found them for all sorts of other critical things? Like the cancers and the other immune diseases we seem to be plagued with? With awareness, and education and an effort to educate our local and regional then national folks about OUR conditions and concerns [i.e. special interest groups] We are among many many groups who approach them….The more the better educated about us? Maybe they won’t overlook ‘details’ in bills and amendments. But they have to have the FACE and the voice of the PERSON presenting anything for us? Because w/o it in their memory? It becomes mush. I’ve lost friends from CIDP and Cancers? I miss these great souls more than one imagines…. But we must go on and do what we can do and should do.

      Hugs and hope always!

    • Anonymous
      October 6, 2010 at 3:57 pm

      Maybe there is some hope for us in this CCSVI.
      I think there is some relation between CCSVI/MS and CIDP,
      as we share demyelating issues with vascular deseases like diabetes.
      I had a great improvement in having alpha lipoic acid, that is good for
      diabetic neuropathy and I do not have diabetes.
      My neuro is going to the ECTRIMS meeting in Sweden Gotemburg….we see…
      Something good will get out of all this as this stirred a hornet’s nest