I was diagnosed in 2007 and am one of those lucky people who get to see my Neuro and MS Nurse every 6 months. My MS Nurse is contactable and has even done home visits when I'm too fatigued to make it to the hospital, which I'm very grateful for.
However, one thing I've noticed is that once you're diagnosed with an illness, whatever it is, you end up feeling like you're on a conveyerbelt with the medical bods assuming, if not expecting, your illness to follow a pre-defined path. You're expected to be a good patient and do as you're told as they're the "expert". Well, I have been a thorn in their sides since diagnosis. I have MS 24 hours a day, 7 days a week, every day of the year, not just the 30 mins I'm in their consultation room for, and I'm very proactive at doing what I can to help myself, from diet and exercise to more holistic solutions. I've done, and continue to do, a lot of reading and I feel now that I've eventually settled on a routine that's benefiting me. Of course, my MS Nurse, Neuro and GP tend to humour me and look at me as if I'm wasting my time and that I should just let the illness take its course, but I don't like being ill, I don't want to be ill and I'm not going to be ill. End of.
Since having my 2nd child in 2003 I've suffered with unexplained bouts of bad cystitis and to cut a long story very short, diagnosed myself with Interstitial Cystitis after researching on the internet. My MS Nurse, Neuro and GP wouldn't believe this and tried to convince me that my problems were down to retaining urine and that I needed to go on long term antibiotics and use a catheter. Wrong. Eventually, I convinced my MS Nurse after she scanned my bladder with her ultra-sound thingy and got my Neuro to refer me to a Urologist. He was next to useless and could only recommend invasive tests and trying various drugs. So, it was back to the internet where I came across loads more info on diets, things to help IC, low oxalate diets and various other things and now I feel 100% better. I'm eating lots, exercising again and feel very positive. I would recommend the books by Catherine M Simone to anyone who feels they need a kick up the backside, regardless of whether they have IC or not. Sorting out my IC seems to be helping my MS as well.
I've waffled on a lot, but I guess what I'm trying to say is don't be afraid to take control, even though others might not like or expect it. That's their problem. You have enough to think about.