MS Discuss: Where do you stand regarding this research?

Message

   I really enjoyed the reports on CCSVI.

However with the latest news, I am becoming more frustrated, as I am sure other MS sufferers and their families are.

I was originally told by a neurologist I didn't have MS, and was suffering from Old Age, my symptoms were severe to me.  I was 61 yrs old at that time.  I went for further testing, MRIs', evoked potentials, spinal tap, and that was when they said I had PP MS, however there was no treatment, and that my symptoms would worsen over time.

I recently had an ultra sound on my jugular veins and they identified that I fitted the criteria as described by Dr. Zamboni.  Apparently the criteria is at least 2 out of 5 markers,  I apparently have 4 of 5 markers, that make me a candidate for the CCSVI treatment.

I am curious if I was never diagnosed with MS would I be able to get the treatment.

Author	Message
Kilkenny Newbie Joined: 22 Dec 2007 Location: Canada Online Status: Offline Posts: 13	Posted: 01 Sep 2010 at 2:24pm
	I really enjoyed the reports on CCSVI. However with the latest news, I am becoming more frustrated, as I am sure other MS sufferers and their families are. I was originally told by a neurologist I didn't have MS, and was suffering from Old Age, my symptoms were severe to me. I was 61 yrs old at that time. I went for further testing, MRIs', evoked potentials, spinal tap, and that was when they said I had PP MS, however there was no treatment, and that my symptoms would worsen over time. I recently had an ultra sound on my jugular veins and they identified that I fitted the criteria as described by Dr. Zamboni. Apparently the criteria is at least 2 out of 5 markers, I apparently have 4 of 5 markers, that make me a candidate for the CCSVI treatment. I am curious if I was never diagnosed with MS would I be able to get the treatment.
	Jim B
	IP Logged

EverRed Newbie Joined: 14 Jun 2010 Online Status: Offline Posts: 11	Posted: 01 Sep 2010 at 7:28pm
	I think the key point is the federal government not going to fund clinical trials now, until the research that the MS Society announced earlier in the summer is complete. Although I'm sure a lot of people think that response is too slow, I think it's the only response that they could give, given that clinical trials are not currently supported by either the CIHR or the MS Society, and they would be the two most appropriate bodies for the government to get their advice from. It would also make the current research supported by the MS Society pointless in some ways - that research still trying to work out if CCSVI actually exists and if Zamboni's findings can be replicated - and if so, clinical trials would be after that.
	IP Logged

Miyoko Groupie Joined: 07 Nov 2007 Location: Canada Online Status: Online Posts: 80	Posted: 02 Sep 2010 at 11:01am
	Hi Barbara and everyone: The federal Helth Minister's announcement, yesterday was very disappointing. There are two CCSVI projects going led by Ontario reseach teams: one examining CCSVI being "congenital" condition, and another assessing the relationship between iron deposits in the brain and MS among other issues. Two German research groups failed to back Zamboni's hypothesis. The overwhelming lack of scientific evidence on the safety and efficacy of the procedure involved maybe the basic reasons for the prudent steps taken by the government on this MS surgery. I personally worry the possibility of further complications after the surgery. There has been many clinical trials from which "healthy" participants ended up disabled people. Research takes time. We have no choice, but be patient. I am also taking Omega 3. Have been suffering from Trigeminal neuralgia for a month now. It's an excruciating stabbing facial pain (left side in my case), though lasting for only seconds and minutes. In MS, apparently it goes away on its own after a few months. I see the color change of the leaves of sugar maple on the street. Hope we all feel a bit more energy when the low temp./low humidity Autumn arrives.
	Miyoko
	IP Logged

	Active Topics Memberlist Search Help Links Contact
	Register Login Privacy & Policies

Living with Progressive Multiple Sclerosis
MS Discuss :Multiple Sclerosis Discussion Forum :Living with Progressive Multiple Sclerosis

Topic: Where do you stand regarding this research?
	<< Prev Page of 5