Crisis and Discord in the World of Multiple Sclerosis

There are many disheartening aspects about Multiple Sclerosis, even aside from the physical deterioration. One is that there is no cure. Another is there are no treatments that are 100% effective or safe. We have made some progress. Fifteen years ago there was virtually no treatment for MS besides the occasional steroid protocol. I say occasional because steroids are cumulatively dangerous and must be used judiciously, for only the most debilitating relapses.

There are five medications currently used to treat MS, but they are called ‘disease modifying’ agents, as that is all they do. They can delay or slow the progression of the disease, but not stop it. Even then, they are only effective a portion of the time, 30% to around 60% depending on the drug and when in the disease process it’s started. They are all administered either through injection or IV infusion and all have truly awful side effects, from continuous flu-like symptoms, to significant injection site skin damage to immune suppression that can result in a fatal brain infection, PML. That last medication is Tysabri, the drug that I receive through an IV infusion every month. The risk of PML and other deadly problems (liver damage, melanoma) increases with time. I am entering my third year on Tysabri. No one knows what happens after so long on this drug.

With these things in mind, consider the reaction to research by a respected and reputable Italian physician, Dr. Paolo Zamboni, who proposes a theory that some cases of Multiple Sclerosis are caused by blockages in the veins that allow blood to return from the brain to the heart. This condition is called Chronic Cerebrospinal Venous Insufficiency, CCSVI. Dr. Zamboni’s approach was a relatively straightforward one: try unblocking the veins and the result should be improved MS symptoms.

Lo and behold, some patients did experience just that.

So you would think that neurologists and news organizations and the National Multiple Sclerosis Society would have been all over this amazing, promising, minimally invasive new advance for an incurable, untreatable disease.

Instead, in the United States, from the professional community, there was the overwhelming sound of…crickets in the otherwise still and quiet night.

My neurologist said he had never even heard of this research when I asked him about it in January of this year, “but it sounds ridiculous”. I had to fax him the peer reviewed journal article by Dr. Zamboni. There was no public response from the National MS Society. American doctors who did know about Dr. Zamboni’s work were generally sneering.

While there was silence and/or downright hostility from the people we depend on to help us, in contrast, the community of people with MS rose up in an outcry of pleading for testing and treatment. Canada was on the forefront in North America, way ahead of us here in this country in at least addressing the possibilities inherent in this process.

Very slowly, in tiny, quiet pockets, and only due to patient activism, venoplasty and stent placement to treat MS began to be done here in the United States. My friend Marc, at Wheelchair Kamikaze, has been a major catalyst in disseminating responsible data in a readily understandable format about the procedure.

There was still nothing from the MS Society.

Next: Finally some exposure. And it gets personal, on two levels.