Hi Wendy,
Time is of the essence when diagnosing UMND....I suppose that the docs feel far more pressure to get it right -- than they feel pressure to give a diagnosis that later turns out to be dead wrong. Your journey seems to be the prototype journey taken by most PLSers -- I, too, played the "waiting game".....the important thing here is that you DO have a plan.
The thought occurred to me, Wendy: One of the very first things that should be looked into is the use of statin drugs. I was on a statin when I first went to Cleveland Clinic, and they changed the drug I was on (the unfortunate result of this change in statins was a terribly dramatic elevation in my liver enzymes -- the myalgia in my legs did not go away). While statins were not responsible for my leg symptoms, if you are on a statin, this should definitely be checked.
Parenthetically, I've since gone off of statins completely - with no ill effects. The fewer man-made pills I take, the happier I am.
And I'm also q. 6 months. The less, the better -- because the docs can't do anything about this anyway (as I've learned).
Mike