I spent this morning calling different doctors in my area and it seems this is so new and specialized that they are referring me to Dr. Dake at Stanford University. I will be filling out the proper forms to be evaluated by him.
This website: www.ms-mri.com lists collaborators that are currently testing and treating CCSVI. It also has a cool video of what the veins might look like.
This link: http://www.thisisms.com/forum-40.html is a forum dedicated to those who have been treated for CCSVI or are planning on doing so.
This link: http://www.bnac.net/?page_id=496 is a study they are doing in Buffalo. I have emailed them and I am still waiting on hearing back. It sounds like this study is geared toward testing for it and possibly not treating it. We'll see.
I think that someday this will be a routine test and procedure they do when looking at MS. I want to be one who benefits from it now and not wait until it is "proven effective." I have confidence it will be.
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maybe that is why so many ms patients have different symptoms...
ReplyDeleteI just feel foggy in the head and my joints are really stiff- my toes are numb- and I have also thought about hormones...it seems to my body that my symptoms are related to hormones- nursing, pregnancy, time of the month- how does that work with CCSVI?
Hi April,
ReplyDeleteHere is my theory about hormones, just a guess. Because blood has spent a lifetime refluxing onto the brain, it has "worn down" the blood brain barrier, or made it more permeable. That is when the autoimmune is turned on, a way for your body to try to fight whatever is hurting the blood brain barrier and now the brain. Hormones are in the blood and normally would not pass through to the brain, but since the BBB is weakened maybe the hormones pass through and do things that they aren't supposed to.
Wikipedia says this about the BBB and MS: "Multiple sclerosis (MS) is considered an auto-immune and neurodegenerative disorder in which the immune system attacks the myelin protecting the neurons in the central nervous system. Normally, a person's nervous system would be inaccessible for the white blood cells due to the blood-brain barrier. However, it has been shown using Magnetic Resonance Imaging that, when a person is undergoing an MS "attack," the blood-brain barrier has broken down in a section of the brain or spinal cord, allowing white blood cells called T lymphocytes to cross over and destroy the myelin. It has been suggested that, rather than being a disease of the immune system, MS is a disease of the blood-brain barrier[13]. However, current scientific evidence is inconclusive.
There are currently active investigations into treatments for a compromised blood-brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier; anti-oxidants such as lipoic acid may be able to stabilize a weakening blood-brain barrier[14]."
Stop what's hurting the BBB and repair it and then no more MS, in thoery, right?