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Stories

It has been truly inspiring to hear peoples stories when dealing with health challenges like MS. There is a movement going on and it has a strong current. When you believe in something strongly there is a force behind it. When you come from a place of struggle and suffering, it makes you that much more hungry.I feel blessed to be part of what I believe to be a great time for medicine-- a new window into an old, murky view.

I had just started practicing internal medicine when Hpylori was discovered and the medical world's view of peptic ulcer disease changed. The transition into a new world view did not happen quickly. This current new movement(The Venous Theory of MS) seems bigger maybe because it is very personal to me. I want it to happen -- I needed it to happen. In 1995, I had a patient who I cured with antibiotic treatment for chronic peptic ulcer disease which she had had recurrently through her whole adult life. We are still friends 15 years later even though I am no longer her doctor. She is my surrogate grandmother. She loves me for bringing her that cure. I love her for getting cured. We love each other in general but that will always be our bond.I truly hope that special time is happening now for MS patients. It is for me. I believe.

The MRV's (magnetic resonance venograms)are the first hurdles. Getting it ordered is the tough part. Insurance coverage may be too much to hope for as it is still "unproven" by medical research. Most Imaging centers CAN perform the study; it is easy to perform(just like an MRI with intravenous contrast). The contrast is gadolinium not the more problematic contrast used with CT scans. The hurdle is getting one's doctor to order it. Getting a doctor to look from a different perspective is not always easy. If you are willing to pay (about $1500), then it should not be an issue. The problem is paying for the procedure if there is a blockage. That is expensive(I am still waiting for my bill). This is not small change. I doubt insurance will help much if at all. It is a major commitment. The good news with it being a "cash pay" service, it may accelerate the spread. The faster Buffalo or one of the study centers completes a successful trial, the quicker we can have insurance support. I think that will be "a while". Buffalo is still only working on diagnosing venous blockages. Then, there is the treatment study. True proof is a long way away. I feel blessed that there is a place in the practice of medicine for "compassionate" use. Dr. Zamboni's approach started out of love for his wife. He used his knowledge of vascular surgery(his chosen field) to find a way to help her. We use "compassionate" therapies in cancer care(despite unproven results) that we think might work because they do good things with other cancers. In heart disease, coronary artery "interventions and procedures" were done for a long time before they were truly proven to be of benefit. It is part of the art of medicine. We live in innovative times and new is often better. Yes, true research is absolutely necessary but that does not mean we can't follow our hearts when something makes sense and is possible before it is "proven". Medicine has always been about a balance between research and clinical practice. This is a great opportunity to use them in synchrony.

Comments

wannabeatms said…
Let us know how much the procedure cost when you get your bill please. I am so looking foward to my future today!!

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