I can relate to your dilema. I've recently been diagnosed as well and am pretty much reeling from the whole thing. I just don't know what to do and my impression of the specialist at the MS clinic I've been to is basically "Well, do what you want to do because nothing really works anyway. You want this drug, you want that, sure, no problem and now move along because I have five-thousand other patients to see." The clinic in the city I live in serves more than 6000 people with MS...and one doctor, so he's pretty busy. I don't find the clinic very accessible but I do have a good relationship with my GP and she's prescribed me a couple of things. I do some research, bring her the info and she writes the prescription...which is good, but a little weird since I have absolutely no idea what I'm doing really.
I had a MRI in the summer when I was diagnosed and when I went to the clinic (my only visit) the specialist didn't have the MRI with him but thought I had a "half dozen or so" lesions. I had a follow-up appointment with an eye specialist (this is the guy who originally said MS - I had double vision suddenly that lasted a few weeks which led me to this eye specialist). This eye doctor whips out my MRI, throws it up on a light screen and shows me the two lesions I have.
The MS specialist wanted to start me on Avonex, but I resisted and said I wanted to think about it, do some research, etc. I didn't know how long it was going to take me to get into the clinic so before I even saw the specialist I had done some research and read good things about statin drugs and my GP gave me a prescription for Lipitor (Sept.).
I stopped taking the drug around Christmas for no real reason. It wasn't the type of treatment where you could feel any differences, although I haven't had any symptons since the Fall anyway(double vision for a few weeks in July, some spotty numbness in legs/feet but everything gone by the end of October). As much as anything I quit because I just couldn't be bothered to get the energy up to go back to the doctor for more Lipitor...my Dad had a rapid illness and died in October and I've been pretty "flat" ever since.
I told the MS specialist I was taking the Lipitor and he was pretty nonchalant about it (again, the whole it doesn't really matter vibe I get from him), but still wanted me to take Avonex. He agreed to wait, scheduled me for another MRI (which was done before Christmas) and I'm to see him in early March.
I've since discovered info about LDN which seems pretty encouraging, most of what I've read are people who have had good results (some bad, some who have adverse reactions, but mostly positive). So, once again, I took my info to my GP and she wrote me a prescription for LDN. There isn't a pharmacy in the city I live in that produces it, but I found one in Toronto that will ship it and I will have it next week.
I've read some good things about a new treatment called Tysabri, you get it once a month at the doctor's, takes about an hour for the injection...the trials apparently have been very positive.
I live in Canada and Health Canada has not yet approved the drug. I'm told that it may be approved later this year, Health Canada is awaiting the second set of trials before approval. The FDA, however, has approved it and if you live in the States that may be something you would want to look into. (BTW, someone from this site told me the Health Canada info--this is a good site for support/info).
LDN is attractive because its oral treatment and I like the idea of staying away from needles and injections if I can, but of course I'll do what I have to I guess. Frankly cost is an issue right now. I work on a contract basis and therefore don't have any insurance coverage that typically comes with a "regular" job with benefits. Even with inclusion in an Ontario drug plan (Trillium) it would still cost me several thousand dollars a year for any of the CRAB drug treatments and even the Lipitor is over $125 per month. Maybe, on paper, the people at whatever government office think I can afford that rate (I would have to pay approx. $3,500 before Trillium benefits would kick in), but I know that's ridiculous. The Trillium plan just looks at your income and slides you into the category that matches the salary level. It doesn't consider other real costs like being a single parent, debt load, etc.
Anyway, LDN is $40 a month and from what I've seen a lot of people have had success with it, so my plan is to try it and get another MRI in six months and take it from there. My logic is if there is no progression six months from now and I'm tolerating the drug well then it seems like a good plan. That said, I'm going to keep my eye on Health Canada to see what happens with Tysabri--always good to have a back-up plan.
And you're right...this does suck.