Laura,

I too spent some time nailing down a diagnosis. Told originally I was too young to have pd (53) and if i had had it as long as I thought (3years) I would be bilateral by then. Nine years later I am still not bilateral although i am old enough to have it.

Was checked for Wilsons and had the tongue wag test that i thought was to rule out brain tumor.

My mother-in-law as diagnosed with PD in about 1980 (though I have been told by my MDS it more likely MSA) but she was put in the hospital to take her off all meds and try starting back up one at a time. She walked into the hospital under her own steam and before she left her feet were frozen in a dystonic ballerina toe point. Ultimately her Achiles tendons had to be severed so she could sit in a wheel chair. Granted she was pretty bad off by that point but the rapid withdrawal of meds made a complete cripple of her.

Whatever they tell you, watch out for yourself first and foremost and if you start feeling that it is going wrong, do what you need to do to make it better. We could see what was happening to my mother-in-law but stood by silently because we thought they knew best. Not necessarily so.
Good luck,
Pam