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.

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

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.

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