When I first received my MS diagnosis in April 1998, I was relieved. Relieved that the symptoms I was experiencing were not from a brain tumor; exonerated from the ‘psychosomatic’ label that I imagined people stamped on me. Multiple sclerosis was presented to me as something that wasn’t a bad diagnosis, but I was too naive to ask, “As compared to what?” I was told that lesions in the brain were caused by the disintegration of the covering of the nerves, and this in turn caused symptoms and deficits of varying degrees. Looking back, my presenting issue was a seizure disorder; then came leg weakness, optic neuritis and sudden deafness in one ear. After that, I had other sensory problems, speech malfunctions and pain. From the beginning, always a debilitating fatigue.
The course of my relapsing-remitting MS was fairly normal, with exacerbations that required IV steroid infusions, prescriptions that treated symptoms and a daily injectable drug that was believed to be a decoy for the destructive forces attacking my nerve cell coverings. I went to seminars and talks, read books, and listened to my doctor. Even with all I knew about the disease, the real truths of my personal MS were unknown. What caused my MS? When would I have another flare up? Could I prevent a flare? Will I progress slowly or quickly? What daily things can I do to help myself? Sometimes I even dared to ask the idiotic question: Could it be something other than MS? Maybe some of these questions have twirled around in your mind, too.
Not much has changed in the past fourteen years, it seems. Questions still come pouring from my heart. Doctor visits bring the same answer of We just don’t know. The three or four or six months between visits leaves plenty of time for trying to determine how to help myself. There’s also time to ascertain which new problem is from MS or from a side effect of a drug or from something non-MS related. (Like general aging!) It took me a long time to realize that during the interim, it’s up to me to maintain my quality of life and seek ways to improve it.
Then I got the opportunity to attend a medical conference in Orlando, Florida last month. Doctors and researchers from all over the world came to the scientific meeting of the International Society of NeuroVascular Disease. The first day was Patient Day and the program centered around the topics of MS and CCSVI (Chronic CerebroSpinal Venous Insufficiency which basically means there is a problem with the veins draining the brain and spinal cord). I was excited to learn as much as I could and see if I could find someone to answer my questions, old and new.
The conference was held at the Orlando Hilton. Dr. Robert Zivadinov from Buffalo spoke first and said that genetics, the Epstein-Barr virus and smoking seem to be contributors to MS. While it has yet to be determined if CCSVI is a disease entity, a syndrome or an inflammatory condition, it is known that the prevalence of CCSVI has found to be greater in people with MS. Research is starting to link CCSVI to other diseases like irritable bowel syndrome, Parkinson’s disease, and other neuromuscular disease. A connection has also been made between Crohn’s disease and having an azygous vein abnormality. (The azygous vein drains part of the chest.)
Then the “Father of CCSVI”, Dr. Paulo Zamboni, of Ferrare, Italy spoke. I was more than thrilled to see and hear him in person! He explained the research he began to help his wife and how he found a high percentage of people with MS also had problems with their veins. His study, trials, and subsequent findings fueled a revolution of sorts in the MS world. [When news of his findings spread, the social networks were set afire with MS patients demanding information and a treatment that they called the “Liberation Treatment” for its purported ability to free people from the bondage of their MS]. Dr. Zamboni stressed the need for ongoing clinical trials and the importance of having the same protocol to diagnose and treat CCSVI patients. One of the most interesting points he made was that dialysis patients whose jugular vein ports become occluded experience increased fatigue much like MS patients. At the end of the day, I had a photo op with him and babbled like an idiot when he asked my name. Totally, embarrassingly starstruck.
Dr. E. Mark Haacke spoke of the importance of studying the blood flow, blood volume and iron content of the brain as well as the volume of the cerebrospinal fluid. Now there are imaging techniques that do all of this and more!. MRI is available in 3D; other imaging like Magnetic Resonance Flow Quantification can determine how the blood flows through the brain (and in which direction) and also studies how the blood crosses through the blood-brain barrier. Amazing stuff –and to think that all of it can be used to help us!
Dr. Bill Code, an anesthesiologist from Canada, spoke about some of the signs of CCSVI caused by too little blood flowing through/out of the brain: fatigue, headache, foggy mind, balance issues, spasticity and sleep disturbances. He discussed the problems of having low blood pressure and ‘thick blood’ and said that if you are found to have CCSVI you are at higher risk for stroke. Dr. Code’s talk was insightful because he has MS and CCSVI which was treated with angioplasty. He was candid in divulging that even though many of his symptoms abated after the angioplasty, some were starting to return after eight months.
Dr. David Williams, a dentist from Canada, reported some surprising connections between cranial dysfunction and disease. He said that people with MS have been found to have more movement in their skull bones! Some problems associated with MS, such as trigeminal neuralgia and headaches, could result from misalignment of the jaw, teeth clenching or those moving skull bones. He explained that when you sleep, the dominant veins to drain blood from your brain are your internal jugular veins. If you clench your teeth when you sleep, the tremendous amount of pressure exerted can impact the vascular system negatively. Dr. Williams also spoke of the importance of Vitamin D, and talked about the finding of spirochete bacteria in gum disease which was an indication of allergy to metals.
I listened carefully to all the other speakers and took notes until my brain began to overflow! I got to talk with several of the presenting doctors between sessions and asked many questions, and often their responses were I just don’t know. But because I had watched them and heard their hearts for the whole day, I wasn’t frustrated or saddened by their response. My heart perceived a glow of hope rising off of them; these brilliant men and women are working to find the answers to their questions, and my questions and millions more besides. They believe the answers will come, and come soon, and I can rest in that.