OP, I am sorry for what you are going through. Being diagnosed with MS myself, I understand completely how utterly terrifying the diagnosis is.
Diagnosed, what, 8 years ago (I don’t keep track because I think that is sort of macabre, sorry.) Meanwhile, my life has gone on very well, primarily because I took matters in my own hands after diagnosis. I have worked with my neurologist and followed all his advice about meds. After the initial storm of the exacerbation passed, I changed my diet, added yoga, changed my job (to one I like much better, but that doesn’t mean that the process to make the change was without angst) and did everything to reduce stress. I put myself first. I learned to say no to guilt trips and yes to helping myself and others. It has been an amazingly freeing change and sometimes I can even be thankful for the diagnosis. Here is what I have learned: One can not help others until one’s own needs have been met.
I am now medication and exacerbation free for several years.
Meanwhile, I stay away from online MS boards which are usually full of a lot of very sad and scary, stressful stories, and I stay away from the MS Society (don’t get me started) and look to the Swank Foundation (another google suggestion), am careful about what tv I watch (no crime drama, no bad news that I can’t do anything about) read good books, stay positive and surround myself with positive people. I do what I can with what I have, where I am, (thank you Teddy Roosevelt) and let someone else handle the rest. I have also, for the most part, removed the negative nellies from my life (there remain a precious few weeds to cull yet) and make sure that my own occasional negativity is in check. This is not easy and takes time and discipline, but is so worth it.
Parallel to that, I stay abreast of the latest MS research. Vitamin D has been shown to be VERY important in immune modulation, and afterall, MS is an autoimmune disease. Yesterday’s Wall Street Journal had an article about high levels of vitamin D protecting against development of MS (http://online.wsj.com/article/SB10001424127887323353204578129280745162230.html?mod=googlenews_wsj) and there are also very interesting studies that show that people who have a high vitamin D level in their blood have fewer exacerbations. Ride google like a rented pony and learn about the latest research and follow up. Be your own advocate, and don’t freak if your neurologist doesn’t immediately back you up, but show him/her the (peer reviewed, very important, that) research you have found and let them simmer on it. Meanwhile, make a plan, update you neurologist and do it. Neurologists have a lot of different diseases to keep current about so it is hard for them to keep abreast of all MS research. That is up to you. Nobody cares as much about your health as you do.
{Amusing aside. I was newly diagnosed, but had entered a horse trial at the Kentucky Horse Park before diagnosis. With the help of meds, I was feeling good, so I went. On the way down, I read some research on vitamin D levels and dosages and left a message for my neuro to tell him about the research and tell him that I was considering supplementing myself with x number of units of vitamin D starting Monday and what did he think? I got a call back later that day when I was leading a course walk. I saw his number on my phone and briefly excused myself to talk with him. He said he thought I would overdose at that amount. I calmly countered with the amount of vitamin D a body receives in one 30 minute bikini-clad sunbath and noted that the amount I was supplementing was less. Silence on the other end of the line for a beat. “Well, carry on then! Let’s talk in a month.” Moral of the story. Educate yourself. Sidenote: some of the people on the course walk really wanted to know why I was talking about bikini-clad sunbathing!}
An esoteric insight. When I was first diagnosed with MS, a very experienced neurologist asked me if I had children. I said that I had horses. He said how many and I detailed the many horses on and off our farm that I am or feel responsible for. He said that it didn’t surprise him and he has noticed a trend that many people who are diagnosed with MS have a heavy burden of caregiving and may have let attention to their own health be on a back burner. I heard him loud and clear and made myself get out of the habit of feeling responsible for everything and trying to fix everything. Just an insight that has helped me.
Finally, note that MS is much more common in the high latitudes. This points again in the direction of Vitamin D, which is made by the body as a response to sunlight. http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2325
Educate yourself. Advocate for yourself. Recover yourself. Go you.
