You have to live with this disease to fully understand how it impacts on your life and your future. What may look a risky option to a neuro, may be viewed quite differently by a patient (especially if the DMT offers the potential of reducing relapses or slowing down disability). Turning up at your local MS Society will show you what this disease can do given time. I'd happily take the risk of skin cancer from a DMT if it kept me out of a wheelchair for a few years.
Re: "Are you surprised? I am not!"Are you being cynical or do you actually think an MS patient knows best?In my experience the neurologists I've encountered are totally bereft of good advice and suggestions. After my ppms diagnosis in 2008 I was basically told 'hope for the best, plan for the worst.' What kind of guidance is that meant to be! Where is the humanity in saying something so hopeless?If the argument is that my expectations are too high then I will argue scientists and doctors are not doing their job well enough. A lot of money and time has been invested in research. MS has been known about for over 160 years. If anything I think MS patients have been far too quiet and tepid for too long. I don't blame sufferers for demanding more. They are suffering and there is no urgency in health care or Parliament.
I am not being cynical. I think PwMS are in the best position to make a judgement on defined or undefined risks. The EMA turned down the licensing of Cladribine because they were not convinced about its long-term safety. Unfortunately, the kind of long-term safety data required to satisfy regulators will only come from using the drug. A CATCH-22. A lot of neurologists believe they are in the best position to assess risk; how can they be when they don't have the disease. What is high-risk for one person may be low-risk for another; in addition the perception of risk changes with time and is influenced by numerous personal factors.
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