I Think I have Parkinson's, but my Doctor says I'm Depressed
 

I can trace the stiffness back more than 15 years. It started in my lower back, then spread to my left hip, then to my hands, and most recently to my neck and legs. For more than five years, I've been dragging my left foot and sometimes tripping over nothing. About three years ago, I started having spasms or tremors while I was at rest--especially at night. About two years ago I started having pain and sweating around my eyes, with occasional double vision. I have this burning sensation in my legs and feet that happened only occasionally a few years ago, but happens every day now. I have a tendency to wander when I walk, often walking into walls or other people. Occasionally, I've found my self walking backward. I've been a computer programmer for years, but a couple years ago, I noticed that my left hand was typing slower than my right hand, which is very odd because the keys I typed were correct except one hand was like a word or more ahead of the other hand. There were other problems too, like some confusion and some compulsiveness. And then there's the fatigue--I get so tired i feel half-dead. I also noticed that stress could definitely make me feel much worse. People at work noticed that I had changed. I could go on, but you probably get the idea. My thinking was that all of this was just part of getting older.

My doctor kept checking me for specific things and the tests always came back negative. For example, they thought the stiffness might be arthritis, but nope, no arthritis. The eye doctor says my eyes are fine. MRI tests for MS came back negative. CT scans came back negative. I became really frustrated because I just knew something must be wrong, regardless of what the tests may show.

Then late last year, I had a sleep study. I had a bad case of sleep apnea. I was also having a lot of spasms while I slept. Some of them were so violent that my wife was bruised a few times. The sleep study showed that I was only getting about four percent of the necessary deep sleep. They also concluded that I had Restless Legs Syndrome.

The doctor gave me 1mg of clonazepam at night to control the spasms while I slept. He also gave me sinemet 25/100, once a day at first and then twice a day. I also began continuous positive airway pressure (CPAP) therapy for the apnea. (For those who don't know, I wear a mask that increases the air pressure to my airways and makes me breathe normally. It works well.) So with this therapy, I began to feel almost normal again. As a matter of fact, I felt pretty good. I was feeling like doing things again. All of the symptoms I mentioned in the first paragraph went away. But, because recovering from sleep apnea is like coming out of a brain fog and can take a long time, I didn't realize that the symptoms I had had could have been from something like PD, rather than apnea.

So while I was feeling better, I was sent to a neurologist who said I was fine and was perhaps drinking too much coffee. At that time, I hadn't yet put the pieces of the puzzle together, so I didn't tell him about the symptoms I had been experiencing and how sinemet made them better. (I also subsequently stopped drinking coffee, but it didn't seem to make any difference.)

So, then, my primary doctor raised the clonazepam to 2mg and I started to be very forgetful and confused. So he took me off the clonazepam and the sinemet and put my on zyprexa (which is a drug for schizophrenia). That was one of the worst experiences of my life. After a month, I decided that I wasn't going to take any more of that, no matter what. He then proceeded to diagnose me as having a dysthymic disorder (i.e. severe chronic depression).

I changed doctors, but as I live in a small town, the medical folks seem all too inclined to close ranks. So now, everyone says I need antidepressants. The latest thing they want to give me is Cymbalta, and that supposedly will relieve all of the symptoms that I described above. Well, they had me on Zoloft and that didn't help. All it did was make me shake a lot. It's also a paradox to me that they are trying to relieve me of symptoms that are already relieved by the sinemet.

I really don't feel depressed. I feel angry and frustrated. It's not that I want to have PD. What I want is a diagnosis that makes sense.

So between doctors, I went for several months without any treatment. That was a rough time. The spasms at night are so bad that I just cannot sleep without some medicinal assistance--and nothing over-the-counter helps. The stiffness I can tolerate. The pain around my eyes is the worst, however.

I have finally talked a doctor into letting me have Sinemet again, twice a day. Each dose only lasts about eight hours, so my days are like a roller-coaster ride. I have the clonazepam back again, too, so I'm finally sleeping again.

So what should I do? I think I have PD, but maybe the diagnosis doesn't matter as long as I get medicine that helps me live a somewhat normal life. I do have disability insurance, however, and a diagnosis would make my life much better, financially speaking.

They want me to start on the Cymbalta next week, but I'm wondering why I should take something that I don't seem to need. I'm worried that if I refuse to take the Cymbalta, they'll just use that as proof that I am depressed and being an uncooperative patient.

Suggestions would be sincerely appreciated.

Hi K.Ibsen..And welcome to the forum!

It certainly sounds like you have Parkinsons symptoms..Especially the foot dragging..I had the same problem, and it was the reason why I went to my Dr..My Gen Physician mis-diagnosed me..twice..I had to get to a Nuerologist to get a proper diagnosis..and preferably a Movement Disorder Specialist..A rule of thumb..If Sinamet treats your symptoms, then you probably have pd

As for the Cymbalta..Maybe get a second opinion?..Thats all I have to offer on that subject, as I have no experience with anti-depressamts

very curious.. have you ever tried benedryl.. pink box?

Do you mean using benedryl to help me sleep? Yes, I've tried it. It doesn't have any effect. I've tried Ambien too. It will help me sleep for a few nights, but then it just stops working.

There have been times when I've been absolutely desperate for sleep. These days I'm using 1mg clonazepam and one tablet of Calms Forte, an over-the-counter mixture of concentrated herbals. This is working for me pretty well. Calms Forte doesn't work by itself, however.

Oddly, the antidepressants have a tendency to keep me from sleeping. I don't know much about the zyprexa drug they tried on me, but every time I mention it to a doctor, they seem to think that it would have put me to sleep. On the contrary, while taking zyprexa, I rarely slept more than two hours in any 24 hour period. It had the opposite effect from what it should have. That's one of the reasons I'm concerned about taking antidepressants. I have had way too much sleep deprivation for too many years.

I've also read that the most common reason antidepressants don't work is due to an incorrect diagnosis. So far, the antidepressants they've given me have either had no effect or made things worse for me.

Don't stop telling the doctors what you think...
 

I went for three years also being diagnosed with depression or being told that I was fine just overworked, etc. I wanted to throw the bottle of antidepressants at the doctor because of how they made me feel. At first they could not see the tremor in my hands. My handwriting had changed. I had one shoe wear out on one side (which was new), and I fell down all over Italy and I could never figure out what I tripped on. (Must have tripped over my own naivete...lol). I had unreasonable fears, and my heart would race. I kept telling my doctor I felt "like I was dying", and I know I shocked him. But I couldn't describe my feelings until I went onto the internet... The next time I saw my doctor he got mad and said, "...Okay! So WHAT IS IT YOU THINK YOU HAVE??". He wasn't prepared for the perfectly logical recitation of my symptoms and the shock at how could now see them so clearly. When I was done he just said, "So do I". He wrote me the referral to the best Parkinson's specialist in town and they diagnosed me in 12 minutes. I was 39 years old.
YOU know yourself the best. Don't lose faith. The truth will set you free - free to find some treatment and relief. Good luck and God Bless. Redbird.

dear K,

you may be only nutrient deficient?

What is the main reason you believe you have PD?

this is from a swedish medical center...

http://www.swedish.org/16923.cfm= if this is not working click this : http://www.swedish.org/16923.cfm
to read entire article- click the above link

Which comes first—depression or chronic illness? While the connection works both ways, one thing's for sure: treatment can make a difference.

Jennifer was 26 years old when her doctor diagnosed her with high blood pressure. But it wasn't until she learned that she also suffered from polycystic ovary syndrome that she began her slide into depression. Like many other patients with chronic illnesses, she hid her depression from her doctor, even as she underwent fertility treatments and a high-risk pregnancy.

"It's so hard to deal with a chronic illness," says Jennifer, now 29. "Many people are afraid to admit that they need help."

After the birth of her son, she broke down and told her doctor of her depressive symptoms—her self-imposed isolation from others, withdrawal from relationships, sleeplessness, and feelings of hopelessness. He helped her understand that like her other chronic conditions, her depression was not her fault. She began taking an antidepressant, and her outlook improved.

"It has helped tremendously," she explains. "I needed it to keep things in perspective for me which it did."

When Illness Triggers Depression
When faced with a potentially life-changing diagnosis of a chronic condition, it can be easy for depression to set in.

"Any illness that in some way seems to increase an individual's helplessness and hopelessness will also be a trigger for depression," says Jeremy Kisch, PhD, senior director of clinical education at the National Mental Health Association. Depression is easy to overlook in part because some of its symptoms—like fatigue or change in energy levels—mimic those of some chronic illnesses

Nutrient deficient? Possible. I don't know what nutrient might be deficient other than one. A physical by the VA hospital a few months ago showed that I was calcium deficient, so I've been taking calcium supplements ever since. Other than that, I eat a healthy diet and take pretty good care of myself. I'm actually in rather good health for being 55 years old. I've been tested for just about everything the doctor can think of, and almost everything checks out fine. Also, through my reading on the subject, I don't recall having read of any dietary supplements that improve the symptoms of PD.

The only bad news is that two colon cancer screening tests have come back positive. They subsequently did a blood test and have scheduled a colonoscopy. I had a colonoscopy a year ago, and checked out OK, but they're doing another because of the bleeding. This problem, however, is far more recent than most of the PD symptoms I've noted.

Reasons I think I may have PD? I have a list of symptoms that are part of the PD package. They are all relieved by sinemet. I can even tell when I'm running low on my sinemet dose, because the symptoms return. The problem I've had the longest is bradykinesia. It has been affecting me for more than fifteen years, and getting worse very very slowly. I tried many things and nothing helped. Then, a few months ago, they gave me sinemet for RLS and the bradykinesia went away. Over more than a decade and a half, it was the first thing that actually helped. I mentioned other problems in my original post, such as dragging my left foot and walking with a limp because my left hip is usually very stiff. Now, with sinemet, I can walk normally again. I'm not dragging my foot and my hip moves normally.

Depression? I think it's very possible that I'm depressed. However, there's a chicken or the egg problem when it comes to depression. The question is: Do I have symptoms because I'm depressed, or, am I depressed because I have symptoms? I favor the latter. Trying to talk to a doctor who just doesn't seem to be listening is very frustrating--and eventually depressing. My first doctor seemed to make up his mind early and seemed to ignore everything after that. If I have depression because I have PD, and depression is common with PD, I think I would rather avoid antidepressants until I really need them and try to attack the depression by treating the symptoms and appling non-drug methods such as exercise. My gut instinct is to use as few drugs as possible.

My life over that past few years has been a slippery slope downward. Less than two years ago I was an assistant registrar at a PAC-10 university who was widely recognized for having successfully implemented several technology systems at the university. I had won national awards for some of my work. But things started to go wrong at work. A new boss came in who had very little experience and started putting a lot of pressure on me and I started having symptoms like resting tremors, intense fatigue, confusion, pain around my eyes--essentially, the stress made everything much worse. (The stiffness, foot-dragging, and some other symptoms had started earlier, but I just tried to ignore those problems and keep on working.) The new boss eventually removed me from my position and gave my job to her best friend. (The friend, by the way, knew nothing about technology and was removed from the position after four months. Now, they've hired someone else and I have no job to return to. I've been erased.) I was told to work from home and only to do programming--and they would tell me what programming to do.

Those were dreary days for me. If I hadn't been forced to watch my career evaporate in front of my own eyes, I might have been better able to realize that something was going wrong inside. That's where the doctor got the idea that I was chronically depressed. But I don't think it was chronic. I think it was situational and made worse by PD. Now, I've been away from work for eight months and have a perspective that I didn't have during those dark days. I think my performance had been falling off and I had been trying to hide it or compensate for it--often by working even harder and putting myself under even more stress.

Speaking of stress, throughout the whole time I noticed that stress seemed to make my problems worse, and I kept telling that to my doctor. After reading these forums and other web resources, I can now see that I'm not the only one who has experienced the problems that stress can create.

Writing this answer has induced stress, but at the same time, it feels good to let it out. It has me tired though.

Tomorrow, I meet with an HRS representative at the university to talk about returning to work. I haven't seen the doctor's recommendation yet, but I'm assuming it's still based on a diagnosis of chronic depression.

Thanks,

Karl

Depression and depression
 

I've studied this one for years and one of my docs is an expert on depression with PD. I've volunteered for a lot of research studies, so my docs are happy to answer my questions and teach me. So let me add to the wisdom offered above:

There's depression as in down-in-the-dumps, caused by things like an attitude of "oh no, I have a chronic disease and my life is ruined," and then there's clinical deprssion, also called major depression, which can be caused by physical factors alone, as in faulty brain chemistry due to brain cells dying off from PD. In many cases, clinical depression comes with the PD and often appears before the PD gets obvious. A neuropsychiatrist who specializes in Parkinson's Disease is qualified to make the distinctions as few others are, but neurologists with a movement disorder specialty are a good bet. Apathy is also likely to be a symptom of PD sooner or later, and it's not necessarily part of the depression. The symptoms of PD, clinical depression, and apathy all overlap, so it's very difficult to sort out.

Kari, I hope you and all readers understand that depression that comes with PD, to upwards of 40 or 50% of us PWPs, is in most cases physically caused, as I've described, and is not something we can "snap out of" or "cheer up" from. It takes medication and sometimes counseling to treat it. The good news is that it is treatable. The bad news is that untreated, eventually, clinical depression is fatal, but before that it damages the brain further. My expert doc will probably keep me on antidepressant medication until they come out with something better, because nothing so far can restore the brain cells that have fizzled.

Finding the right dose and the right brand of antidepressant can take a year or two, so we have to persist in observing ourselves and reporting as well as we can.

Some people go on and off antidepressants, and I've observed that those PWPs often tend to think the depression is something either to be embarassed about or that they should be able to control. These are the same people who heal broken legs by mind power and refuse to use a cast because they would appear weak. No, no, not! But sometimes I wonder why they choose the one ailment to refuse to be treated for. This is my own opinion based on what I've been taught.

I've taken Zoloft, Wellbutrin, Effexor, and Cymbalta. Cymbalta is by far the best for me, and everyone differs, but I have no side effects from it. I've been on it for about a year. It helps relieve pain in a minor way, too, especially at higher doses. It doesn't make me foggy, either. It doesn't relieve or mask PD symptoms by itself, although relieving depression will help the PD, according to my docs. But everyone's meds are different.

Do you have PD? What kind of neurological exam were you given? Tapping forefingers on thumbs rapidly? Rotating wrists in the air rapidly? Touching finger to doc's finger and then your nose, again and again as doc moves his hand to different places in the air? Walking down the hall and turning and walking back while carefully observed? Being pulled by the shoulders from behind and watched for how you stayed upright? Have a Strine test? Have your limp wrist rotated by the doc both with an without the other hand patting your leg? Questions about tingling, numbness, weakness, etc.?

We're not doctors here, but we've been through some stuff. I hope this helps.

Jaye

karl,
thanks for posting your experiences and feelings. i was dx'd about a year ago and i have learned more about pd here in this forum than from evrywhere else.
gps and even neurologists often arent able to diagnose pd. the neurologist i went to is well known, highly respected in his field, and closely connected to a well known teaching medical center. he knew enough not to dx me but reffered me to an mds - movement disorder specialist - that dxd me with pd in about 30 minutes. my symptoms were stiffness in my left arm, dragging left foot, and initial tremor.
if you worked at a pac ten there is probably an mds somewhere nearby. those drs you are seeing now are frustrating me,

just from reading your posts.:rolleyes:

Jaye,

Thanks for the help. I've sort of had those thoughts, but not with the clarity that you provided. Why can't doctors talk that way?

I have read that depression is part of PD. To this point, I had assumed that it was a normal reaction to the negative aspects of the diagnosis. I hadn't thought through the possibility that the depression could be organic.

It's odd perhaps, but I don't really feel bad about the prospect of having PD. I've told my doctors many times that I don't feel depressed, and I don't. Perhaps I appear depressed to others. I know that I feel depression and something a lot like apathy when I'm not taking sinemet.

Part of my perspective stems from the fact that my father went through hell during the last decade or so of his life. It was thought that he had MS, but they didn't have the tests then that they do now, and just about everyone in the family has doubts about the diagnosis. However, it was clearly something neurological. It was also something very similar to what I'm going through now. Having been through that vicariously has perhaps readied for what is happening to me now. And in another sense, I've felt for years that I may eventually share his fate.

However, I feel positive about the fact that there are so many more medical tests and treatments now than there were then. (And we have forums like this one, too!) I guess it's strange to think that even though I may have the disease my father had, my life will probably be much better than his. Our perspectives are often relative to what we have experienced during our lives.

I have visited neurologists and they've done some tests such as the ones you described. Every time I went to a neurologist, however, I've been dosed with sinemet, and sinemet is effective at relieving the symptoms. I have asked them how the tests can be revealing if I'm taking a drug that removes the symptoms. I never have received an answer to that one.

Maybe I have PD. Maybe I don't. What I know for sure is that something is wrong, that the symptoms match up well with PD, and that sinemet helps a lot. MRIs show I don't have MS.

Jaye, I was leaning against taking the cymbalta. Your words have been reassuring. I am reconsidering. I was concerned about the side effects--especially since colon cancer screening tests are coming up positive and I'm facing all that goes with that.

Thank you,

Karl

hello Karl,
 

dear karl,
I have been trying to spiral upwards -and see if I can if at all possible put my
mind -body and spirit... into such a mode - I no longer talk myself into being - ill -but believing and thinking on wellnes?
I was dxd w/ PD age 32 -finally
I am 44 now - I am better now!

:)
__________________________

http://www.nlm.nih.gov/hmd/emotions/self.html

Medically-trained Harvard psychologist and philosopher William James took an active and supportive interest in what he called "The Religion of Healthy-Mindedness" which, he reported in 1902, "has recently poured over America and seems to be gathering force every day." 28 James claimed that "mind-cure gives to some of us serenity, moral poise, and happiness, and prevents certain forms of disease as well as science does, or even better in a certain class of persons." 29 Even physicians who worried about the excesses of the mind cure movement were forced to admit that cures of functional disorders often followed mind cure practice and that "physicians have failed for many years to pay sufficient attention to what may be aptly called psychical disorders of the body, or psychical conditions engendering functional derangements, or functional disturbances produced by psychical states." 30 A great concern of many turn-of-century medical practitioners, however, was that people with serious illnesses might never get to see a properly trained physician because they were so intent on curing themselves via mental self-adjustment.

Dear Karl..
 

... They usually give you sinemet at a dose of three 25/100's per day taken every 8 hours. If you show a positive they may ramp it up to see how you react, so in my opinion they are not giving you enough sinemet (or concomittant agonist) to really tell if you are ripe for a PD DX. The pain around the eyes, now, could that be a neuro reponse (neurological pain, many names for it, but neurological pain means that it stems from problems of a specific set of nerves as they are wired to the pain center), or from grinding your face into your pillow at night (no,kiddding; do you only sleep on your back or do you sleep on your stomach?). The leg kicking sounds like nocturnal myoclonus, which is common with sleep apnea.
YOu are in a bad position. When the local docs gang up on you, it's time to get out of town. For some reason , most GP's and quite a few neuro's are just plain blind to PD, others see it in seconds. I was never depressed either, until my life fell apart, but that often comes in degrees. I just hate it when docs try to throw an antidepressant at you , it's a testimony to their ignorabce and laziness (not all docs, but too durn many of them imho).
YOu have do to a PD center of excellence, where you can be evaluated by a team of both seasoned and in training neuros. If they disagree, then they will know what to do next to either clinch or rule out your DX. Good luck.

They're only allowing me two 25/100's per day. I take one at 8 PM and another at 8 AM. I am asking for a third, because the symptoms start showing up about 4 or 5 PM. It's almost predictable. It's 6:30 PM right now and I'm already stiff and the eye pain is with me too.

I believe that I have read that eye muscle spasms and sweating around the eyes are a primary symptom of PD. The sinemet relieves the problem. To me, it's probably the worst. I don't sleep face-down. I wear a CPAP mask for my sleep apnea. I usually cover my eyes with a protective mask, because the air movement from the CPAP can dry out my eyes. My eye doctor helped me with that.

I have one other problem with my eyes that's also associated with my tinnitus: If I turn my eyes too far to either side, the tinnitus gets much more intense and a pain radiates from my eyes, sometimes all the way to my neck. Over time, I learned to keep my head and eyes pointing straight forward as much as possible. Sometimes, if I forget and turn my head and eyes rapidly to the side, I will get quite a jolt.

It's not really leg-kicking. There are two problems.

First, when I lay down to rest, I unconsciously will wind my legs together and sort of curl my feet together. There's often a sort of creepy-crawly feeling inside my legs, especially at the knees. This is probably RLS.

Second, when I am really calm and just about ready to fall asleep, suddenly it feels like I've been hit by a jolt of electricity and I shake for several seconds afterward. It varies. Sometimes it's just a leg or an arm, sometimes it's one side of my body, and sometimes it's my whole body. This is not the same as that jolt that most people do just as they're falling asleep--which does happen to me too. These bolts of lightening that hit me seem to excite my whole nervous system. Afterward, I'll lay there trying to quiet my nerves for anywhere from a few minutes to maybe a half hour. Once my nerves quiet down, I get another jolt and the process starts over again. I have seen many sunrises in the last few months because I've spent the night just as I've described. The only meds that help are narcotics such as clonazepam. Alprazolam and diazepam aren't as effective as clonazepam. I can honestly say that there have been many times recently that I have been almost desperate for sleep.

Yeah, I've had that thought. Sometimes it feels like the local doctors are weighing their professional relationships against the needs of their patients. One would hope that patients would come first. But then, with so many lawsuits, the doctors almost have to close their ranks just to protect them selves.

Fortunately (sort of), I'm a disabled veteran and have the Veteran's Hospital as an alternative. The VA did the colon cancer screening that came up positive. My local doctor seemed to act like it was just me complaining again and has left that whole issue up to the VA. To this point, I haven't brought my neural issues to the VA, but I think it's time I did. The VA, at least, seems to take my health seriously.

That points to one of my issues with antidepressants. It sometimes feels like they just want to get you feeling better and out of their office. I suspect that some conditions may just get better on their own and some antidepressants may just help someone get through the rough times. It may work just often enough to encourage the practice. I, however, like to go through life with my eyes wide open, even if I don't like what I see.

I read once that in order for antidepressants to work, a person must first be depressed. The article pointed out that the main reason antidepressants don't work is misdiagnosis. My doctors here seem to believe that treating my depression will make my symptoms go away. For me, that's just too hard to believe. I may try the cymbalta they want me to take because, ah what the hell.

Antidepressants are not used only for depression. I take a tricyclic AD for joint and muscle pain, itching, and for help with sleeping. I did not take it for depression, because I wasn't depressed. So an antidepressant may help you sleep better and reduce your pain.

~Zucchini

Keep a good eye on the way you are perceiving your condition, but if at the end of the day you feel that sinemet is helping you, then it sounds possible that you do have a condition within the pd spectrum.

I have spent the last several years with doubting doctors, who won't see what I know to be there, and what people who know how I function can actually see - that this drug helps me in ways that nothing else has done. I currently have a reluctant diagnosis of 'possible parkinson's disease' but my consultant now discusses my 'parkinsons' with me! He has stuck his neck out even though other doctors have not been able to make up their minds about me, thus attesting to how difficult this disease is sometimes to diagnose.

I also had a pet scan which came back negative, but the same consultant said it was not 100% accurate, and about 5 or 6% of people WITH pd would have a negative scan. Nobody knows why.

Again it highlights some of the very real diagnostic issues - doctors are often reluctant to put someone on medication for the rest of their life without ruling out every other possibility.

There is also the issue of once you ARE on sinemet, so many symptoms go away, if you are on the underlying problems become much less visible, and so you get a very cautious response from your medics.

Good luck with your quest for a dx. I believe that what we all want is the right label and medication that helps our condition, it sounds as though sinemet is doing it for you, as it did for me.

Best wishes
Lindy

(If no-one has said this yet, if you do not have a dx now then it might be worth taking out the right kind of health insurance as it will be too late if and when you receive a formal dx of pd, here in the UK I would not need to have it, so perhaps someone else stateside could advise on this, could someone else pick upon this?)

Wow, Karl
 

...your thoughtful and reasoned approach is really giving us a chance to think, which is good for our brains, of course. Everything above is IMHO true and helpful.

Even so, don't take my experiences, or anyone's, as medical recommendations. I know you're too smart to do that, but i say it for the unnumbered readers seeing this.

Your jerking while falling asleep is something that I have experienced in two sets of circumstances: (1) while coming off a narcotic pain management drug during a long recovery from surgery; and (2) when taking any generic form of Sinemet or any form of Sinemet CR (sustained or controlled release)--I just don't tolerate one of the fillers or dyes or something and have to have the brand name drug. For what it's worth.

Jaye

Karl...
 

...i think that together, all of us ARE getting somewhere, although I don't exactly know where:D. ike jaye said we're not docs, we just have together the myriad of symptoms that make up the spectrum of PD. And Lindy is so right about the insurance bit. I missed out on long term care from a professional society because i was jerked around and it was too late by the time i asked for it. Also consider long term care; you'll need it, I'll bet.
Back to the eyes. As a PWP, my personal experience is that I sweat buckets from the whole head, as well as the forehead, but only when my body temperature gooes beyond where I can't naturally shed the heat. WE seem to have a problem with many autonomic, homeostatic control features of our bodies.
And benzodiazepines aren't narcotics, they are a class of chemicals acting at their own specific receptor systems. Clonopin just differs enough in structure that it extends it's range of effects into the antiepileptic, antiseizure area of chemical control. Narcotics act on a specific set of receptors called opiod receptors, which i have no doubt would "Cure" many aspects of your troubles, but you risk addiction, but that can be controlled too, if it's worth it enough to you.
The leg thing, i'll bet IS myoclonus, a kind of "myoclonus plus", which bothers me because it should not be to the degree that you describe it in PD. That "restless leg syndrome" of curling up your legs is a typical "dystonic" response of undermedication, strngely enough also described as "dyskinesia" in overmedication at peak blood levels of dopa.
Do take our advice and go through the "team" approach to PD DX at a center of excellence. This avoids the "one doctors opinon" pitfall. cs

Jaye,

The jerking and tremors while falling asleep was occurring while I wasn't taking any medications at all. It started several years ago, before I started seeing a doctor. At first, it didn't bother me very much--at least not overtly. I could fall asleep. My wife would tell me that I spasmed all night long, but I didn't remember any of it. Sleep studies, though, determined that I was only getting about 4 percent of the deep sleep I needed.

ol'cs,

Everyone seems baffled by the problems I'm having with my eyes. I can tolerate the leg problem, except when I get that creepy-achey feeling in my knees.

Everyone,

I'm starting to feel a bit overwhelmed. I've learned a lot, and I do very much appreciate the caring and thoughtful replies. I have to leave now to go talk with the HRS folks at the university where I work about returning to work. That should be interesting.

Thank you very much to all of you. I wish you the very best.

Karl, your whole experience is so much like my own that I was astounded when I read your posts. That included my taking family medical leave from my tenured academic position for four months in 2000 to recover from serious clinical depression prior to being diagnosed in 2001 with Parkinson's.
One of the things I encourage you to do, since you are apparently in the early stages, is to research all of the possible neuroprotective strategies that many of us have tried and are continuing to use to preserve what is left of our basal ganglia. Look up high doses of Coenzyme Q10, low-dose naltrexone or dextromethorphan, and of course, reverett123s ginseng, along with a variety of other available antioxidant nutritional supplements. Check out posts by Ashleyk and myself for details on low-dose naltrexone LDN and dextromethorphan DM, which is available over-the-counter in several cough syrups.
Robert

My wife had similar problems
 

My wife had similar symptoms to you when she started her treatment and had the same difficulties getting it diagnosed (over two years and many specialists). We really didn't believe it either until the Parkinson's drugs actually relieved her symptoms.

We first started with Mirapex but that made her sleepy and depressed and a shoe shopper so we switched to a low dose of Sinemet (Ldopa/Rdopa) (3 100mgs/day) in combination with Azilect/rasagiline and she had exactly the same experience as you with the leg and it was keeping her up.

Anyway so anyway, after much experimentation - I'll tell you what worked *for us*. This is not a recommendation because there is so much variation in how PD patients respond to medication but these are things that you can discuss with your neurologist. I do recommend that regardless *you* make the final decision about your meds - remember that your neurologist only has so much time and cannot monitor your doses and timings as closely as you can.

So what worked for us was basically taking a low dose of Requip/ropinerole (.5 mg tid) with the Sinemet/rasagiline. This completely got rid of the restless leg and allowed my wife to sleep. The dose was low enough not to trigger the other side effects (sleepiness, compulsive behaviors) and actually seem to help with the edema she had with Sinemet alone.

The rasagiline should help with the end of day stuff that you're experiencing (as might switching to a controlled release form of Sinemet) but a major additional effect for my wife is that it combats the depression. She feels brighter and more alert but not medicated. We had tried Zoloft earlier when we were on Mirapex and she hated it. There is some evidence that rasagiline may delay Parkinson's progression too. Anyway, it is extremely well tolerated by my wife though we had to titrate the dosage to .5 mg - at higher dosages it was causing vivid dreams (and sleepwalking with the restless leg keeping her up). You do have to watch the drugs you take with rasagiline though since it has the potential to interact with several families of other drugs.

The other medication that we've found helps with the depression is Modafinil (Alertec/Provigil). The major use of this drug is combating sleepiness. It's much milder than amphetamines and doesn't have the side effects of caffeine. We started it to combat the occasional sleepiness she gets with Requip (though hopefully, the delay release form Requip-XL available soon will help too) and but it also combats the depression. I want to emphasize that what she feels is the return of motivation, wanting to do things, brighter but not in a giddy artificial way or in a foggy-stupor type of way. Fairly mild effects but significant for her. Your mileage will almost certainly vary.

Again, this is only what worked for us. You need to talk to some specialists about this (not a nurse or GP) and even then you really need to educate yourself about the meds because the specialist will be dealing with many patients and will tend to treat the average patient. In our case, our neurologist is a busy renowned doctor who does good Parkinson's research but he is a poor listener and his initial suggestion was to eliminate the rasagiline, increase the Sinemet and maybe add an agonist. If I wasn't a biochemist researcher myself, and insisted on customizing the meds to fit my wife's needs, that's probably what would have happened too. So regardless of what anyone says in the end you do need to trust your body and what it tells you, especially for PD sufferers since everyone seems to be so different.

Unfortunately, I believe all of the meds, rasagiline, modafinil and ropinirole are still on patent and are not cheap (esp rasagiline which is very new and not on some drug plans). I think modafinil and ropinirole are coming off patent soon which should mean dramatic price drops.

I wish you the best of luck.

I'll Start Cymbalta Tomorrow
 

Well, at this point I feel like just giving up. It isn't because you all haven't been encouraging. I guess it's because I'm confused by all of the complexity. I said at the beginning of this thread that I don't want to be diagnosed with PD, but I sure would like to know what's happening to me, and I sure would like to be able to set a course.

My GP has delegated all of my meds to a person who is credentialed as a psychologist and a nurse practitioner. He wants me to take cymbalta starting tomorrow. He didn't even want to listen to my symptoms. He just brought out three boxes of samples: 30mg for one week and then 60mg after that.

Maybe this will help me from feeling so fatigued. Every day, about mid-day, I get so tired I feel like I'm ready for death. I've tried coffee, but even just one cup makes my sleep problems much worse.

Anyway, I didn't get any instructions about when would be the best time of day to take cymbalta. Does anyone have any suggestions?

Karl

the reason i mentioned benedryl is because it works the way artane does. on the other side of the dopamine equation. they use it in er for epileptics in seizure. benedryl works well for many atypicals.. like myself. one of my first symptoms was depression. not that benedryl works for depression, but my internal specialist and psychiatrist are working towards trying to figure out what all is off kilter and if benedryl works for me.. why? for me it works in relaxation of muscles and slows my breathing.

here is a fascinating link about dopamine.

http://bprayer0.tripod.com/bprayer/dopamine.html

Cymbalta (duloxetene HCl)
 

I wasn't told any particular time to take it, either, but doc said take it with food because it's hard on the stomach. If it affects your sleep, shift the time accordingly, I've been told.

It may help you with the tiredness because it fosters a longer cycle of both serotonin and norepinephrine (two neurotransmitter chemicals) that affect well-being and energy, respectively. I'll leave it at that for now.

Do you know how to do a private message (PM) on this forum? You are welcome to call on me if there's anything I didn't make clear, or just for suppport.

It WILL get less burdensome. The sun is still shining out there somewhere.

Jaye