Posted 11/18/2015 11:43 AM (GMT -5)
Lodk66,
Welcome to Healing Well.
That's wonderful that you have : 1) an MDS available to you, and 2) a referral to an MDS. You are following a very similar path to what I did - testing, process of elimination, verifying response to PD meds and clinical diagnosis. (You are waiting for the latter.) Physicians will often 'test' your response to Parkinson's mediations - in particular, carbidopa/levodopa AKA Sinemet. It sounds like your response has been positive to the meds. I am not a physician or in the health field. I just know from experience that the testing you mention and the fact that you respond favorably to carbidopa/levodopa are considered to be indicative of Parkinson's. Unfortunately, as you probably know, there is no definitive test for PD - just a process of elimination and then a diagnosis based on observation and meeting 4 (?) of X criteria. For example, things they look for are your gait/stride, whether your arms swing freely(or is one/both sides 'stiff' and don't swing naturally), tremor, etc.
It sounds like you are in good hands. If you question whether you should be continuing to take the medication, I would call the MDS's office. They are there to help you - don't hesitate to call, especially if it causes you anxiety. You don't necessarily need to talk to the MDS, just ask to speak to his/her nurse. They usually know the answer or can find out and get back to you.
And ... as a side note, just because you are on levodopa/carbidopa now, doesn't mean that would be the best choice long term. There are other options, especially for someone as young as you are (I was 44 when dx.)
Also ... I would encourage you to research and discuss options and side effects of the meds with your MDS. But always remember that you are your best advocate. No one knows how you feel better than you do. Speak up. Ask questions. Research.
Best of luck to you. Keep us posted on your progress.
lizzy4451