Originally Posted by reverett123

Jak-

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

Originally Posted by Conductor71

Aw, thanks for opening the door a little wider to facilitate discussion. Now that I understand that one of the things we're looking at with meds and levodopa is 50 years of stasis, I can say I am in full alignment with you there on our woeful current standards. Why push to produce better, more sophisticated treatments when we keep our business or research mojo going with the status quo. Monies will continue to pour into pipeline "developments" that never go anywhere, while patients get older, always focused on that ever elusive "cure". We all know that a cure is only in the patient's best interest. It's rather an easy, little status quo cycle to keep going.

Do you find it odd that your neuro would give you a possible PD diagnosis after just examining your MRI and a left hand tremor? I am just comparing to diagnostic standards here which are sorely lacking. I was pegged for six years with Essential Tremor as I didn't have much else going on. I thought that Neurologists usually required the presence of at least two cardinal signs of the disease, if not three these days. Aren't you wanting more evidence that this is indeed PD? In its early stages, PD looks like many other, more benign conditions, so I am really astounded that your neuro would leap to PD with only one symptom.

You must have pretty sophisicated MRI there. I am fascinated because I have never been convinced that my tremor is Parkinsonian as I have a family history of benign familial tremor. My MRI was simply studied to rule out atrophy and MS (no mylenation present). This is the first I have heard of a tremor being identified via MRi presence of infarcation. I do know that researchers do not even know for sure what pathophysiology is involved in PD tremor, so that is great they can tell you with some confidence that they can make some direct correlation.

Finally, what makes you think PD is autoimmune? Is this based on what you see in your work environment?

Just to clear things up.. I did not or do not judge anyone for whatever course of treatment or non-treatment they choose. I only sought some clarity as things seemed to be rather confrontational all the way round. I, for one, would love to have some regular contributors who are med free, i think it will make for some great points of comparison down the road.

Thanks for clarifying, Jak.

Originally Posted by Floridagal

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

Originally Posted by indigogo

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.

Originally Posted by made it up

Jak,
If you're given a definite diagnosis this is an excellent site to belong to.
However I get the feeling you might just be trying to take the **** out of the PD community here now.
Perhaps tone it down a bit as it could well be that you're jumping the gun and it turns out to be a bit premature or even unnecessary if say it is an infarct etc.

Originally Posted by reverett123

Jak's "extoling of an unproven theory" is far more at home here than somebody copping an attitude. Just a brief look at the archives will show a ton of unproven theories and there aren't any guards at the gates trying to keep them out.