As Gomer Pile would say, surprise, surprise, surprise! Today we went to one of our neuros and I was shocked to hear him say a few things that are completely contrary to what our primary neuro has told us. Anyone have any opinion on who is right? Here are the topics:

1. Eating. One neuro told us protein completely blocks the sinemet so that you don't get it at all, the effect is the same as if you didn't even take the drug. Today neuro #2 tells us no, the protein merely delays the drug getting into the brain, but it does get in there. What is your take on this? We feel neuro #1 is correct-if we eat any protein during the day, the whole day is pretty much shot.

2. Vision. Neuro #1 told us our vision problems were cause by the lack of the eyes to converge like they used to, due to low dopamine. Clearly PD related. Today neuro #2 says nope, it's just fatigue. Has nothing to do with the PD. His advice? Close the eyes and rest them for a bit. OK-dokey.

3. Pain. Another eye-popper. All the back and neck pain we have? Neuro #1says its the PD: neuro #2 is telling us we have bad posture and need to do stretching exercises, it's not PD related at all. What the $#!

4. My favorite contradiction of the day (and it's not even lunchtime!): med dosing. We were trying to split med doses up so that we were taking them hourly, to minimize the peaks between sinemet dosages and the sleepiness side effect of Mirapex. Neuro #1 says great, that's the best/"optimal" way to take the drugs if you can stick with that schedule, because it is an even distribution of the meds (as even as we can get without a pump or patch). So he is pleased.

Problem is, hourly med schedules are damn near impossible to stick with. We have had to switch to a two hour schedule, which we discussed with Neuro #2 today...his comment: there's no real difference or need to take the meds on an hourly basis as opposed to every two hours, no difference at all. What? Does anyone here have any experience that would indicate better symptomatic relief on a one versus two hour schedule?

These two guys are the top in our metropolitan area, so they are not hacks. Anyone have any thoughts on who is right?

Isn't it fun to have two completely different opinions? Makes healthcare all the more exciting!

Here's my take:

1) Protein - Some people are simply more sensitive to protein in regards to their meds than others. While I don't agree that protein COMPLETELY blocks the Sinemet, it certainly interferes with absorption for some people. Solution? Take you meds on an empty stomach prior to eating. I have a high protein diet and if I approach it this way, no issues whatsoever.

Winning doctor - Tie

2) Vision - Convergence is a typical PD symptom/problem. Dr. #2 is way off on this one.

Winning doctor - Dr. #1

3) Pain is clearly PD related from things like dystonia and simple muscle soreness from the lack of dopamine.

Winning doctor - Dr. #1

4) Med Dosing - Steadier, consistent dosing of meds is far superior than haphazard taking of them. However, it's a highly individual thing.

Winning doctor - Dr. #1

Score: Doctor #1 = 3, Doctor #2 = 0, one Tie

Run away from Dr. #2 and it sounds like you'll be in pretty good hands. Good luck!

1. Eating.
Protein interferes with absorption; not completely block it. I think this is highly individual and depends on disease duration, from what I have read. Neither is entirely correct.

2. Vision.
Doctor #1 is correct. Google "convergence and Parkinson's" in Scholar. It's in all the standard medical texts- first reported in 1999. Run, do not walk, from Dr. 2

3. Pain.
DUH! Dr. #1 wins round three.

4. My favorite contradiction of the day (and it's not even lunchtime!): med dosing.

This is why Duodopa is in clinical trials (pump infusion of levodopa directly into small intestine) in US. Benefits: steady, lowest possible dose of levodopa, no to little dyskinesia, no protein interference. May even be neuroprotective as it is much more in line with how our neurons functioned when healthy. A dream, right? Wrong. It's been in use for 5 years in Northern Europe; in UK it will be "end stage" treatment only supposedly due to costs. This is the kicker...in order to qualify for the pump, you must be rejected as a candidate for brain surgery?!? This is absurd as the Doctor #2.

I think the one vs. two hour schedule depends on what your PWP's body needs. I tend to stay ahead of the game by overlapping doses at 2 or 3 hour mark the second I notice a wearing off, so it's based on trying to keep ahead of symptoms. It's rather like taking pain meds so the paid doesn't emerge. Once they emerge full bloom, it's really hard to get meds up and running again. Now that I think of it...I need to write Solvay and get some answers.
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Hands down, I'd choose Doctor #1- this person is up on their research but not so over the top with it that he does not take into consideration patients and clinical practice- he's in touch with the real world. See above for specifics.

Maybe they both are, sometimes. I've been taking carbidopa/levidopa in homemade liquid form for almost 3 years. I started with an hourly dose, (I keep track of my dosing in a small notebook so I don't have to rely on remembering when I took my last dose. I also use a kitchen timer sometimes to remind me because I tend to forget to take doses if things are working ok). As time and the parkinson's has progressed, I've been spending more time lately tweaking my doses. Especially on those days when nothing works when or as it should. Then I listen to my body (mostly the screaming dystonia in my feet and back) and take an extra dose or more as needed.

I was initially dx'ed 12 years ago at 39yo.

Contradiction 1: Depends on patient
Contradiction 2: Depends on patient
Contradiction 3: Depends on patient

Most Surprising regarding dosing of meds for best reaction:
Depends on patient.

If we do not understand what Parkinson's disease is and what causes it, any research regarding treatment is directed toward the symptoms and not the disease.

My personal opinion, can neurologist #2. 1. He knows nothing about Parkinson's and the medications used to treat it. 2. He is just an idiot. You decide.

I hope I didn't get too technical for you.

It has been my experience over the past 10 years, doctors will differ in thier diagnosis somewhat. That being said, a pig is still a pig no matter what type of mud it rolls in. If you are responding to dopamine then it is a pretty good bet you have Parkinson's or Parkinsonism. In some people protein does block the action of dopamine completely. Others can eat protein whenever they like and not have this affect. Pain is a real symptom of Parkinson's disease. Yes I agree that daily stretching exercises can help relieve the pain. Key words here, CAN HELP.
Vision problems are well documented in regards to Parkinson's disease

As I stated in the begining, cross doctor #2 off your list and be sure to inform all you come in contact with about him.

GregD

Yes, I think you are all right....I am just flabbergasted that someone who is a PD specialist does not seem to get some of these issues which the VAST majority of PDers have. It defies logic, but here we are. One thing that concerned me early on was his scripting of Stalevo for us...we asked our regular neuro about that and he said nope, you are not ready for that, that's a long way off. As much as we liked to hear that of course, it also was a red flag that perhaps this other doc was a bit hasty in his scripting. We never filled it, and he has never brought it up, I guess he got the message there.

I feel sorry for folks who just blindly take what their doc says and goes with it. And scary.

Well, I'm going to offer a completely different opinion here, and not just for the sake of being ornery. I actually kind of liked Doctor 2's responses because he didn't jump to pathologize every thing that was happening for you, lurking, and offered some kind of perspective that the body can still be trusted in some ways, even with such a malevolent disease process. Now everybody is different, and that kind of thing would actually make me feel safer and more optimistic - but I know others feel more secure when whatever is wrong can be framed under a medical title of some kind, and they feel more taken care of that way. And I say this as somebody who has been extremely frustrated with many aspects of the PD condition not being recognized, although for me it's more that the side effects of the meds are not acknowledged, and that things like diet/nutrition and proper exercise, physical therapy, digestive health, are not routinely addressed as part of PD treatment - in fact that appalls me.

So Doctor 1 was able to talk about convergence phenomenon. Well, great - but what did he suggest to address that? And he also recognized that neck and back pain can be a part of the constellation of PD symptoms. Nice. But what did he advise you could do about it? Doctor 2, while not seemingly giving the gratification of being so empathic, and offering something that perhaps sounded a tad judgmental ("bad" posture is not a value-neutral way of describing anything) - but maybe there is a truth to the fact that all the neck and back pain might actually lead to having less than optimal posture, and that stretching might alleviate that further consequence in some way, which may help to counteract the spiral of pain. Greg, on the other hand, seems to feel that something that "CAN help" is bad - I don't get that. If it can help, maybe it's worth a try?.............And what did Dr. 1 offer to alleviate that symptom in any way?

The protein and dosing thing - well, it really does vary from person to person and changes over time, so I don't think anybody's pat answers are really gonna help, but better to have someone willing to work with your individual metabolism to help you figure it out. I've had greviously little of this help, and I've been fortunate to see what is considered some of the very top neurologists...

It's frustrating not to have symptoms recognized - I understand that - but for me it's far worse not to have them addressed once they are recognized. And just anecdotally, five years ago I think I was suffering from that convergence thing and I thought I was losing my vision. My eyesight has improved so much since that although I was starting to need reading glasses, this trend has been completely reversed, and my eyes have gained considerable strength. Other people my age even without PD are surprised by my vision. I'm not bragging, I'm just saying that even with these symptoms, there are ways to improve, and there are ways that our bodies still can be things that can work and respond to attention. Doctor 2 actually seems to offer a little faith in that.

Well, I think it comes down to the individual. Protein doesn't bother me - I take Sinemet with meals if that is the way the schedule falls, and it works fine. I've only had PD about 7 years, and , sure, this could change.

Neck and back pain - well, I've had that off and on for years, but much less now that I've started seeing a physical therapist that specializes in neuro problems - and she told me that my posture was awful (okay, that I knew), did some work on my back, (I can't describe what except that it hurt a lot, briefly) and now I stand up straight and Voila! No pain! And I exercise daily. She specializes he helping people with PD get their bodies to working normally again and releasing the tightness....I don't know if PD was the cause of the back, neck problems, but this PT appears to have been a good answer.

Eyes - well, presbyopia is an age-related condition in which the eye can no longer focus properly. Happens most when you are tired. That happens to be my eye problem, as diagnosed by an eye doc, who sees no relation to PD as this is a common condition. Glasses help to correct this. I don't really think a neuro is qualified to diagnose the cause of eye problems, except to say it may be this or that or related or not to PD.

Don't know about the dosing issues - I just know that my Sinemet/Mirapex combo doesn't last as long as it used to - unless I am doing something physical, and then my 3 hour schedule may go to 5 hours....

No advice about which neuro you should see, but don't rule out seeing other specialists just because something may be attributed to Parkinson's. It still needs treating if it bothers you. I would be more put off if my medical providers just wrote off all my ills to PD and, told me nothing could be done, then ignored them!

I guess the purported benefits of the second opinion cut both ways. Good luck negotiating the medical maze....Parkinson's puts us in a very complex situation. It's certainly the most challenging thing I've tried to manage - well, maybe child-rearing is right up there, but that is another forum.