Lindy,

I have no problem at all with you discussing this. It was spoken in the tone of a diagnosis and I was handed a pamphlet to register with the NPF registry. I was a little confused. I think that Greg is right. If I do have PD, it would be young onset. I think that doctors are afraid to diagnose PD in people so young, especially if their PD symptoms are on the atypical side, like mine are. I presented with tremor on both sides and cogwheel rigidity. I think I have a little more slowness and stiffness on my left side. I responded to Sinemet, but not as well as my doctor had hoped. That is why I took his suggestion last week and saw a new MDS that recently joined the practice. She did an EMG because I have been having alot of pain in my arms. There was concern about Thoracic Outlet Syndrome and possible ulnar nerve entrapment. The test showed that those things were not an issue. It confirmed for the second time that I have carpal tunnel syndrome. It is moderate and surgery would be the fix.

As far as whether or not the new MDS thought I had PD, she wasn't sure. I have been on Sinemet since March of 2010. I didn't take it the day of the appointment because I wanted her to see me without meds. After the usual exam, she siad that, yes, I do indeed have a tremor. She didn't say that it was a PD tremor or other type of tremor. She wasn't sure if she felt the cogwheel rigidity or not. She said that the Sinemet that I have built up in my system might have been masking symptoms. I had already asked my regular Neuro about the possibility of having a DaTscan done to see if it would either rule in PD, or rule out PD. He had not yet referred anyone, but seemed willing to do so. Well, this new MDS has referred many people for this test. She told me that I am the perfect candidate. I thought I might have to go to Seattle for the test, but I won't. The DaTscan is coming right to Spokane THIS MONTH! I just saw the new MDS last Wednesday. She is going to consult with my regular Neuro and I think they are going to set me up for the DaTscan. If I don't hear from them by Tuesday, I am going to call and check on things.

This journey has been four and a half years long and I am more than ready to hear if it is PD, or not PD. If it is, I candle it. I pretty much figured I had it after I discovered that the Sinemet worked. I went through the whole grief thing. Funny, just when you get to a place in life when you feel like life is going good, and you have accepted your fate...your whole world gets shaken up again! I am not going to let this rule my life, whatever it is. Am I scared? I am. I am afraid that they might tell me it's MSA, or PSP. What if it's something worse that PD? What if they can't find anything and tell me it's all in my head? I know that it isn't in my head. I didn't want this. I didn't create this. I didn't know what was wrong with me. I went to a Rheumatologist and he was the first one to mention cogwheel rigidity. Those two words led me down the path that I have been on for way too long. I am scared, yet excited to think that I may finally be able to find out what it is that has been going on inside of my body all this time.

Thanks for bringing this topic up. I am sure that there are other people that are in the same boat I am in right now. Hopefully, this will help them, too. It's nice to know that you aren't alone!

Hugs,

Evonne