Going off all drugs for diagnosis

In August my G.P. gave me a trial prescription of Sinemet.  For the first time in 5 years I felt almost normal.  You would think that this would have brought me closer to a diagnosis.  Two Specialists later, and now I'm going through the only test I probably haven't had, which is an EMG.  Anyway, I decided to take the proactive approach.  I talked to my G.P. and I told him that until a diagnosis could be reached, I saw no need to continue the Sinemet.  Additionally, during this process, I started to see a Psychologist who could report back to my doctors his observations both on and off Sinemet.  I told my G.P. that I was going to let the symptoms get as bad as they could get in the hope that a doctor will finally say "Yep. I know what it is, and here is how we handle the symptoms."  My G.P. has agreed to put me on temporary disability during the process if the symptoms get to the point that I can't function effectively at work. 

Although I'm worried about how my emotional and physical health will be affected by stopping the Sinemet, I am more concerned about just continuing to take a medication because it appears to work, as a "shot in the dark".  I don't want to wait another 5 years for a diagnosis.  I just don't believe that effective treatment can be rendered without the doctor stating what he is treating. 

Has anyone else out there had to go to such extremes in order to get a diagnosis? 

Any input or insight would be appreciated. 

Just wanted to let you know that I went through a similar thing.  I was diagnosed with PD by my neurologist and placed on Sinemet and Stalevo.  With the two drug combo my symptoms all but disappeared.  I decided that I wanted to go to a movement disorder specialist to ensure that everyone agreed that I do in fact have PD, and not something else.  (I do so hate having to be tied to a pill bottle, especially if it is unnecessary.) 

So, I asked my neurologist if we could slowly take me off my PD meds and have me med-free for at least one-month, so that I would have no PD drugs left in my system and would show visible symptoms to help assist the movement disorder specialist with making an accurate diagnosis.  The weaning off the drugs was no fun, but being totally off the drugs was even worse.  The symptoms returned to a greater degree than prior to going on meds to start with.  However, I felt that it was worth the discomfort and gave me peace of mind when the movement disorder specialist agreed with the diagnosis, based upon all that was going on with me. 

However, with all of that said, now that I am back on my medications, they do not work as well for me as they did prior to my self-inflicted withdrawal from them.  They still make life bearable, and thank God, I am still able to work, but I have noticed that the symptoms are not as controlled as they were in the beginning.  I do experience stiffness and pain, some tremor, and my mental state is not as good as it was before.  (I suffer occassionally with what I lovingly refer to as "park-fog.") 

So, with all of that I strongly urge anyone else who may consider going this route to be careful, think things through very carefully and be prepared to take whatever may happen as a result.  As we all know PD affects everyone differently, and so do the results of our meds.  We each must determine what course of action will give us the most relief, not only physically, but mentally as well.

God Bless!

JB