Originally Posted by StaveFoundation

Is Endocrinology the place to start or a Parkinson's Neurologist? Seems once my father was seen by a Parkinson's specialist, there was no doubt in the specialists mind he had PD.

Originally Posted by reverett123

You are dealing with one of the most mis-diagnosed conditions on the planet. There is no test to settle your mind. Even the best neuros get it right less than two-thirds the time and they have to have your cadaver to do that well.

We don't know much of anything about it. What causes it? A loss of dopenergic neurons? Really? That's not a cause, that is just another symptom. Or a blasted hypothesis.

They don't know and don't want to tell us because it is an admission of their failure. And no one likes to fail and neuros REALLY don't like to fail.

And all they can do is to prattle on about dopamine. What about the INTERESTING stuff? For example, what is it about adreneline that renders me helpless? Why does ANY sort of stress leave me helpless on the floor? Not a neuro's job - ask an endo.

Why do such a high percentage of YOPD have such a traumatic past? Why doesn't our neuro want to know about the hell that so many of us have gone through? Because we are patients that represent failure and we piddle on the carpet.

Sorry to wander off a little, but to answer your question - you do not want a doc that gets so happy about a diagnosis this early in the game. You want some guy that will lie awake at night thinking about you.

As to endos, etc - IMHO and after 30 years of thinking, I think it is obvious that PD is about the failure of control systems. And that is what endocrinology is all about. And it is amazing. It leaves the egos in the dust.

Here are a couple of websites to get you thinking-

http://www.dopadoc.com/2011/06/10/di...ts-parkinsons/

and

http://amatterofbalance.wordpress.com/

The first one is by an MD who is fighting PD himself and the second is my own somewhat neglected work.

Nothing is simple about PD.

Originally Posted by soccertese

my advice is to stop trying to get a diagnosis from lay people on message boards. unless you are seeing a neuro who is a complete quack they can diagnose pd even in a 28 year old. i guess if you got a bunch of senior members replying that you could have pd then you could feel pretty sure you needed to get a 2nd opinion but you got a few opinions pointing you in different directions.
if you want to see if sinemet helps, the "gold standard" for treating pd, then ask him to prescribe a weeks supply and see if it helps. if it doesn't, then pd drugs likely aren't going to help.
if you were prescribed mirapex then it sounds like the doctor thinks you may have restless leg syndrome and he's possibly using mirapex as a diagnostic. you seemed to be on too low of a mirapex dose and for too short of a time to treat pd.

Originally Posted by dabearzfan85

Thank you soccertes,

After reading your reply and Sue's I am realizing how much this situation is weighing on my mind. I am already a worrisome person, and to not knowing what is causing, or how to treat my symptoms is getting to me. I think this is why I am looking in so many directions. That and the conflicting/ not direct attempts at explaining it by the doctors.

So how would a neuro diagnose PD? I was thinking about trying to be refered to one soon, but as I replied to Sue, I have already racked up close to $3,000 in med expenses, and even with insurance do not want to rack up more. Yet, living with the symptoms and uncertainty does not seem great either. If you wouldn't mind, could you elaborate on what I could expect from a neurologist appointment? I know the first visit is usually a consultation and then I image I'd have an EEG and/or MRI done. Two other quick questions,

1) Since the shakiness is during the day and the weird jerks/twitches are when I fall asleep, would they need to do an overnight study or could they see abnormalities during the day?
2)Would it be better to see a neuro that specializes in limb movement or sleep stuff, or does it even matter? I am naive about the medical world as this experience is my first time seeing doctors for anything but simple flu, vaccination, strep throat etc. so I don't really know how to navigate it quite yet.

Thanks again for the advice and the guidance!

Matt

Originally Posted by dabearzfan85

Hello all, and thank you for the support and answering my questions-

First off 28 yr male, nonsmoker, non alcohol or caffeine user, not overweight. Here is the gist of what I am wondering about. I have always had trouble sleeping, but about a month ago I would wake up at night and not be able to go back to sleep. Shortly there after I began to gasp for breath every time that I entered the seep state. Now currently, one month after the initial symptoms began to increase I experience jerking in my neck and torso when I am about to enter the sleep state, and am having hand and head tremors along with mild daytime muscle contractions and twitches.

Other information – I have tried miraprex and it had no effect positive or negative, but tradazone 50mg increase to 100mg along with Ambien to sleep and that knocks me out enough. It is not the apneas that are awakening me to my knowledge, but I am 100% sure that I can not get to sleep due to the jerking. I am currently starting requip today, building from .25mg to a final dosage of 2mg. Additionally, I’ve had 2 sleep studies the first came back with possible Periodic leg disorder or mild sleep apnea. In the second study I did the twitching thing, and had 104 episodes of “periodic leg movement” although they were not associated with my legs. My apnea scores in both were very low, 5-7 July 2013 and .5 Dec 2014.
There is a video that shows my exact symptoms (not me in video, but exactly what I experience if I do not take the trazadone and Ambien).

My question is this: Can jerking be a sign of Parkinson’s? I also have read that poor sleep can be an early indicator of Parkinson’s which I have had for the past 2- year (Poor sleep is what got me into initial sleep study in July 2013). If so, is it completely out of the ordinary for the jerking to manifest in my neck/head area and abdominal region? Also, are there any other ways to tell if I may have Parkinson’s such an MRI, or other neurologically based methods? Would the progression of the symptoms come on so quickly/ what could cause the tremors AND bodily jerks. Lastly, if there any significance to trazadone helping me out initially, then becoming less effective?

Sorry for so many questions, but have a lot of things going on and no real guidance one way or the other. Thanks in advance –

Matt

Originally Posted by johnt

Arsene,

Welcome to the forum.

You write that:

"Sinemet ... works for a while then the side effects kick in ... excessive tremor and anxiety with Sinemet Plus".

Are you sure that the "excessive tremor" wasn't levodopa induced dyskinesia. If it were, a smaller dose may help.

What was your dose? Were you on Sinemet or Sinemet Plus? Is it a resting tremor and what is its frequency?

John