I suggest you try out different neurologists who specialize in movement disorders to determine which is the best fit. Not all neurologists are familiar with the specific issues those of us with Young Onset Parkinson's deal with. Also not all medications work the same for everyone. Please try not to get discouraged. There are some wonderful people out there who are more than willing to share their information and referrals with you. Keep your thoughts positive and know you are not alone.

Sinemet is wonderful. My dr. says that we really do not know if the drug stops working or if it just cannot cover the more advanced loss of dopamine. I'll use it as long as it works and if I need to use an electric scooter later, I'll tool all over the world in it!

I felt a tremor in my right arm at age 45. A close friend who is a neurologist watched me very carefully for over a year and then sent me to the dept. of neurology at the University Of Michigan where I was diagnosed with Parkinsons almost immedately. I took Sinemet and several others for 20 years and was able to be a DBS candidate in 2009.It has changed my life. I am now almost symptom free and take a very low dose of Sinemet only. There is life with Parkinsons and a new life with DBS.

Lisa, I was diagnosed with PD in 2001, I was 45. My main symptom was fatigue and a change in my gait. I also had dramatic changes in my hand writing. After 10 years I still have no noticeable tremor, and the slight tremor that only I notice is completely stress related. I didn't take Sinemet for the first two years or so, using instead Marepex and Amadadine. I have resisted raising the Sinemet dose for several years opting for functional rather than normal. For the past year and a half I've been off the Marepex entirely it made me extremely sleepy, to the point of narcolepsy and caused some obsessive thoughts that were quite annoying. At every step of the way I've had to shake off the urge to go with the conventional wisdom. I have a great neurologist at the VA who trusts me to guide my own treatment. She seems to understand that I have a brain and live with this thing every day. I have tried consultations with some big name clinics and doctors, and she has supported me every time. The results have ranged from quite distressing and disruptive, to confirming that what we were already doing was working well. My realization in all of this is that, while a physician partner can really help, they can't make it go away. I have terrible pain first thing in the am getting out of bed. You're the first other person I've heard discuss this. I have a pretty high pain tolerance, but some times I really dread it. The thing I have discovered in all of this is that I have to keep my life about more than PD. If the only thing I get for struggling through the pain of getting out of bed is another day with PD, what's the point? We are all more than a diagnosis. I struggle with slowness and not wanting to exercise, and people asking "how are you doing" and having no real desire to hear the answer. Parkinson's is teaching me things that I would have never wanted to learn had I a choice. I can't say that I'm open to the lessons every day, but I've learned to be thankful for the lessons I never would have learned without PD. I look at DBS as something I will use when its all that's left. My "ace in the hole" if you will. I have been able to shift and adjust meds, exercise, and work schedules, leisure activities, and other things to get relief and stay positive. For me managing stress, keeping engaged and seeking new interests and physical activity are all essential. My fear about DBS at the two and a half year mark is, what do you do 3,5, or 10 years from now? I hope this helped, hang in there and remember you are a valuable person. Keep talking to us, you are not alone.

I have been experiencing a great deal of the symtoms of PD with muscle spams and tremor of my left hand mainly in my wrist and thumb. the problem is i often don't even know my hand is vibrating quite a lot until someone points it out to me. but when i attend my GP often the tremor isn't visible. i tried to hold my hand in all different positions to see if it brings on the tremor, but to no avail, which meant my GP only sees a general shackyness which appears to be related to anxiety. Recently over the last week i noticed when my hands are down at my side if i move them into a specific position my whole wrist and thumb does all the vibrating i've been experiencing for over the last two years. Does this mean its not PD because i can hold my hand in this certain position and it starts to vibrate.
Also i have a lot of other off and on symptoms such as my four toes on both feet curl inwards and both my hands are becoming claw like in particular on my left side. i also feel generally unsteady and my hand writting has changed completely. there are many more symptoms such as my head somtimes shakes if i put my head back a bit more than my normal posture. Also very occassionally my left arm goes completely rigid and at first the pain is very bad, but after a very short time the pain eases and i can reach down to my left hand, which is almost clenched and pull it out of the positon but if i don't pull it right up to just under my chest it springs back into the spasm with the severe pain and i have to start agin. this has only happened to me twice over the past month, but it took about four times on both occassions to find out that i needed to pull my arm right up out of the spasm. can anyone tell me if any or some of this sounds like PD, in particular the volantory trmor part. thanks A