Jak-

I highly recommend the "Ignore" option that comes with these things. You are welcome here.

We ALL have alot to learn, matters not how many degrees we have. I certainly appreciate all the love and support that I have found here. When I am feeling argumentative it's been when I didn't feel listened to. When I was busy investigating the side effects of the dangerous but helpful medication, it's been when I have felt really afraid and worried about my future. I have expressed much anger at the medical community. As a nurse, no longer able to work, I did not have any idea how awful it feels to be completely at the mercy of someone who seems clinical and uncaring. God help me if I have acted that way. If I don't allow posters to be who they are and describe their experiences, no matter what they are, then when I feel crappy and negative and seem so contrary, then who will listen to me??? we are all in this TOGETHER! FG

Ive heard many Nurses say that too. As pts they felt so powerless and Nurses can be very clinical at times due to the workload. I always try to have a laugh with pts. The medical profession and mistakes !!!!Yesterday I met a lovely couple. He had his entire large intestine out twenty yrs ago and has had pain ever since. Bad pain. When it was removed the problem area was the size of a small coin!!!!!!


Jak

re: use of MRI in PD diagnosis - it is standard practice to use one in the US during the process of a PD dx, but it is to rule things out because nothing else shows up ("your brain looks healthy; must be PD"). I believe that your (Jak) experience with your doctor seeing something that meant PD is what is interesting; I don't think I have heard of an identifying marker before.

re: the long time use of carbodopa/levodopa - this is a sensitive topic, I think, because it is something that each crop of newbies has more information to work with - both from talking to other patients and from what our docs are learning. We all are lab rats when it comes to taking PD drugs over a period of several years; it seems like we are collectively coming to the conclusion that less is better - that is IF you can accommodate your life to make that work.

It's all a big trade off - some need maximum symptom control in order to keep a job for a few more years - but does that mean shortening their effectiveness? Can people with tremor last longer on a smaller dose? How fast would we progress without any meds at all? Is any of what we are taking toxic? Now? After a few years? In two months? Who knows? Nobody knows. Nobody.

The sensitivity arises from the question, "What if I knew then what I know now ........." If only I had waited to start Sinemet, I wouldn't be so dyskinetic now ........ if only I had started Sinemet earlier to squeeze a few more good years out .... if only .... if only.

That's the value of this kind of forum ..... it leads to some kind of collective wisdom that even our doctors don't understand - but they would have a better understanding if they bothered to seek the wisdom - then act on it. That's the goal of activism; that's why we keep posting.

I may or may not have Parkinson's, no test is available to tell me or anyone here that we really 100% for sure know that is the correct DIAGNOSIS???
Hello people.......a doctor may at times act like a "god", walk and talk "god-like", yet they are not.

Yes, I feel for all people here, young and old being told they have this because I was told that several months ago and am trying to come to grips with all that I have seen and heard from many different opinions and sources. The TRUTH sometimes hurts, yet the truth will STAND when all else falls into the recesses of time. I want to find out if there is SOMETHING BETTER than the Sinemet or other meds prescribed for this condition. I am not telling any older patients who know beyond a reasonable doubt they have this disease they were wrong for taking the medications their doctor gave them. Are we not all at least still "INDIVIDUALS" at the end of the day and able to make choices of what we take or not??? I pray to GOD that I am not guilty of making a false judgement against another person whether they have Parkinson's or not. I just want to be given the chance to voice my opinion here and offer AN OPINION; take it or leave it. Nothing more or nothing less.

I see that some here are at odds with differing opinions. It is still a free country at the moment, so choose where YOU stand. I only wish that we could all learn from our telling our thoughts without getting to take it all like we are fighting each other. PARKINSON'S is enough for any of us to try and deal with without all the childish crap. Can we be CIVIL here?

That is my humble opinion on what I have read in this THREAD so for. Hope this will pass inspection. I would like to enter this ARENA if we can all try to learn from different opinions and end being hostile. I don't need STRESS and neither do any of us who have this; stress if the worst thing we can get.

just_me_77

You have voiced in a more diplomatic way whats mostly my view too. The whole diagnosis treatment problem, and I mean problem, is complex and individual. So as you say someone may learn from another persons story.

Thats a good thing. I dont get upset by these posters, as some friction happens in forward movement. Too much friction is counter productive.

Im going to keep posting what I have found out for those who want to read it. By all means have your say. If its counterproductive dont be surprised if your ignored

Jak

Some true believers may like this.

A new study has claimed that as many as half of all Parkinson's sufferers may not have the disease at all.

It has been claimed that thousands of people are being misdiagnosed with the condition every year because many doctors do not know enough about Parkinson's disease to give a proper diagnosis.

http://www.barchester.com/Healthcare...nosis/376/1035

Jak

Ahh Yes.

Jak

Hi all, for two months now, I have had these internal vibrations on my right arm and leg. They are most noticeable upon waking but also I am aware of them during the day. I also have pain on the bottom of my right foot and cramping in the back of my right calf and thigh. I have seen 2 neurologists that say nothing to worry about and then one Parkinson's specialist that said could be early signs but 90% not. My gut tells me it is. My mother had Parkinson's at age 75 and recently died at age 81. Anyone else have these symptoms? Also, for the last month, the internal vibrations have spread to my other sign but still dominant on the right upper arm and right upper thigh.