u/Head_Hauncho

I posted last week about a subpar experience with my neurologist and today I went back for an EMG for some weakness and atrophy in my right hand and to check in about the Sinemet trial. It’s working great - like night and day. Within an hour of taking it my arm has full swing and tremors are gone, leg rising fully off the ground, all that good stuff. So I tell him it’s working and he says “that’s great” and I’m like “I mean it is and it isn’t because I guess this means I have Parkinson’s and this guy changes the subject. He doesn’t correct me or negate what I just said but he also doesn’t confirm it either. He asks me about the effects, wear off time, side effects etc. but never actually says “You have Parkinson’s.” He does, however, write me a new prescription for it and basically tells me I can take it as needed, which I am positive isn’t true. Dose and timing are very important from the way I understand it. He was just so casual about - a less well informed person would’ve absolutely heard it as “just take it whenever you feel you need to.”

Anyway, I am now looking at out of pocket costs to get a one time consult with an MDS at a Parkinsons center for excellence in my area.

Jesus Christ. So I’m one of you now - I guess?

Long story short: I’ve been having motor symptoms for about a year and I finally got in to see a neurologist in February. He ordered a DAT scan and it came back inconclusive but with subtle loss in the posterior left putamen (which aligns perfectly with my symptoms.) I went in for the follow up today and he was basically like “yeah man, hard to say. Let’s put you on a 30 day Carbidopa/Levadopa trial and see if it helps. Then we can give you a diagnosis… or not.” He didn’t even do any of the bradykinesia tapping tests or anything. I just feel like he hasn’t even done a full work up and is just throwing shit at the wall. I guess my question is: is this a typical experience with someone who isn’t an MDS? Any input is much appreciated. Thanks in advance.
**edit: I don’t currently have access to an MDS. My insurance is quite poor - it’s a whole thing.