I do hold out hope for better understanding, better treatments, and a cure. I don't hold out a lot of hope that it will come in time to do me any good. It might. It might not. I don't count on it. The one thing I hang onto in that department is my own intellectual curiousity into the cause of MS. If I can throw some light into the dark before I go down, that helps keep me going for a little longer.
For myself, like Bromley, it is easier to think of MS as being a terminal disease. I have gotten the typical stupid reaction from people, who say 1) that MS doesn't kill people, and 2) that people with MS live a normal or near-normal lifespan so it's not that bad, implying that somehow a long, miserable life is preferable to a short decent one, 3) there are worse diagnoses to get, like ALS, and 4) it's God's plan for me. I don't believe 1 or 2 are generally true, for 3) the biggest challenge for MS is uncertainty with making life decisions, because unlike ALS, we don't know how we'll end up MS-wise, and 4) God has the same general plan for everybody, which is that everybody dies, some sooner in life, some later. Coming to terms with mortality has actually been a big anxiety reducer for me. Having MS has greatly reduced my fear of dying, to the point I no longer fear getting cancer or any other disease or dying in general. I could get other nasty diseases. I just don't worry about them anymore, because to me, the worst has already happened.
I knew there was something wrong with me for several years before I was diagnosed, perhaps even going back to my early 20s, 20 years ago. The feeling of wrongness slowly grew over time, a sense that I was eroding, like watching a skater go into a death spiral in slow motion. The circling the drain feeling. I was not a big fan of going to doctors and there was nothing symptom-wise except for lack of energy for a long time, when some neuro-type symptoms appeared I waited for them to go away, which they did. My symptoms are still mild but they are worse than they were and I realize that it is all downhill from here on out. For me it has been gradual, almost imperceptible slide. But if someone didn't know there was something wrong with me, even a neurologist, they wouldn't see it.
So what to do? It has been more than a year since diagnosis. I'm putting myself on a six month plan. Six months to wrap up affairs, simplify my material life, do the best I can at my job, read the books I want to read, figure out which unfinished projects I really want to finish and let go of what I'll never get to now. Six months to catch sunrises and sunsets, listen to good tunes, live in the moment, and suspend all expectations, good or bad. I am a loner with no friends or family close, so I won't be able to make it to EDSS 6 and stay alive. If I can no longer drive to work (I drive a stick shift so I need both feet) no longer see well, no longer do my job, no longer buy food at tbe store, I'm a goner. People might argue about my cutoff criteria, but it is what I've chosen for me and I don't apply them to anyone but myself. Determining the acceptable level of quality of life is a very individual thing. If after six months I'm still around and hanging in there, then I'll go for another six. Because I don't really know what is going to happen. Neither, really does anybody. The world is full of people loaded with vibrant plans who get killed in car accidents.
I figure I could go bad at any time, so to speak. Or, I can muddle along for a few months or years longer still functional and gleaning something worthwhile out of my life and contributing something to the pool of human existence (whatever that means).
I've also read that there is no such thing as benign MS, but I'm not sure that's true. In my more cynical moments, I suspect the marketing whispers of the CRAB manufacturers to start early, no matter how mild the disease and keep injecting forever. However, there ARE people with a very mild course of disease; I've heard from someone with MS who worked, raised children, ran races, after 25 plus years now having only a mild problem in one leg. Or about a 65 plus year old woman with MS of many years standing who has worked up until recently, walks with a cane, is active in church and community, and stays mobile with the help of frequent physical therapy. She is at least as well off and probably even better off than a decent percentage of other women her age. Neither of these people have taken CRABs. If benign means "not affected" then it is probably true that there is no benign MS, but it benign means relatively minimally affected, especially in relation to one's age, then there is benign MS.
Do I think I have benign MS? No, but I really have no idea. I probably have had MS for 10 years, and possibly even 20. Do I think I have severely progressing MS? No, at least not right now, but that could change. Or not. Would a CRAB change my prognosis? Maybe. But I have decided I would rather have the best quality of life I can have in the next six months, I'll trade for a better quality near term than making myself feel unwell with a CRAB in the hopes of a not-as-bad later. I'm already over 40, so that's a factor; if I was 25 I might feel differently. Treatment choices are very individual decision for people to make.
I think it's hard not to let dread be worse than the disease, and focusing short-term plans helped me cope. Other people may have different strategies. There's no single right way to go.