[Stitcher]

Parkinson's often misdiagnosed
Neurologists submit guidelines to identify movement disorder

By Cheryl Clark
STAFF WRITER
http://www.signonsandiego.com/uniont...1n3parkin.html

April 3, 2006

As many as 200,000 of the estimated 1 million people in North America who learn they have Parkinson's disease, a progressive disorder marked by tremors and slow movement, may be misdiagnosed because the condition requires special expertise to recognize and treat.

They instead may have ailments with a far better prognosis, such as actress Katharine Hepburn's head tremor, or recurring strokes that may be treatable. But typically, they have diseases much more serious and aggressive than Parkinson's, such as supranuclear palsy or multiple system atrophy.


NANCEE E. LEWIS / Union-Tribune

Dr. David Song conducted tests on Parkinson's patient Ann Maier last week at UCSD's Thornton Hospital. Maier frequently monitors the disease's progression.
Likewise, the academy said 5 percent to 10 percent of people who complain of tremors and stiffness have Parkinson's, but are told they have something else, such as arthritis.

“From my experience, (these) patients are often told they have tendinitis, frozen shoulder, or 'you're just getting older, dear,' (or) 'You slept on your arm wrong,'” said Dr. Janis Miyasaki. “I've heard the most amazing things.”

This key message about misdiagnosis was issued today by the American Academy of Neurology as part of its first comprehensive set of recommendations to doctors and patients on how to detect and treat Parkinson's disease. Miyasaki was one of 20 movement-disorder neurologists who wrote the guidelines.

The recommendations, published as four reports in the journal Neurology, were released as 10,000 neurologists and others attended the academy's annual meeting at the San Diego Convention Center. The conference will last through Saturday.

“It's important for patients who have these symptoms to see a neurologist, and, if possible, a movement disorder specialist, because we have more experience in diagnosing these problems,” said Dr. Oksana Suchowersky, lead researcher for two of the papers and director of movement disorders at the University of Calgary in Canada.

Far too many people are being wrongly diagnosed by family practice physicians or other doctors who don't see Parkinson's disease that often, said Suchowersky and the other reports' authors.

Ann Maier, 60, of Escondido is an example of how Parkinson's can sometimes be misdiagnosed. Maier, a high school gym teacher for many years, told her primary care doctor that her right arm had gradually started to shake.

“It wouldn't swing properly,” she said, “and my handwriting changed so much. I couldn't read my own hen-scratch grocery list. And I was walking differently. But one side of my body was affected more than the other.”

During several visits over 18 months, she said, the doctor blamed her problems on a condition known as benign essential tremor.

It took two years before she was referred to a neurologist, who diagnosed her with Parkinson's. Now, her disease is well managed with appropriate drugs, and she sees a neurologist to frequently monitor Parkinson's progression.

Parkinson's symptoms

While the guidelines might raise suspicion among patients that they won't be properly diagnosed, there is probably no need to switch doctors as long as the one providing treatment is a neurologist, Miyasaki and Suchowersky said.

“But you can ask your neurologist if he or she is sure of the diagnosis. And any doctor who treats Parkinson patients should re-review their patients' histories as they follow them every year or two,” Suchowersky said.

About 50,000 people are diagnosed with Parkinson's each year based on clinical symptoms, whether they respond to drugs or show signs of the disease's progression.

“Baby boomers are aging, and with that, we're going to see more Parkinson disease,” said the academy's guidelines director Dr. William Weiner, chairman of neurology at the University of Maryland School of Medicine in Baltimore.

Because a large percentage of patients with diseases that mimic aspects of Parkinson's have a more dire prognosis, he said, it's important that people be diagnosed correctly so they can make appropriate social and financial plans. For example, they may need a wheelchair or a nursing home sooner.

“It's important for people to have some notion of what lies ahead,” Weiner said.

There is no blood, imaging or spinal fluid test that can detect the disease, which can only be identified definitively by an autopsy. The condition can occur in people as young as 30, such as actor Michael J. Fox, but usually appears after age 60. It is marked by loss of dopamine-producing neurons in an area of the brain called the substantia nigra, which shows up as pale instead of dark in an autopsy.

Degeneration of brain cells manifests first with trembling on one side of the body, such as the hand or leg when it's at rest. Attempts to move appear hesitant because limbs feel rigid. Gradually, the disease progresses to create a stooped posture and normal walking becomes a shuffle. Facial expressiveness eventually disappears and patients begin speaking in a voice that is much softer than before.

Parkinson's disease is not considered terminal, but its progression can result in pneumonia or urinary tract infections, which can be fatal.

Latest research

The academy's four-part guidelines emphasized these points:

If movement problems don't lessen significantly with doses of the drug levodopa, sold under the brand name Sinemet or apomorphine, other neurologic disorders should be strongly considered. However, 30 percent of patients who do respond well to levodopa actually have a disorder other than Parkinson's. Levodopa restores levels of dopamine in an area of the brain that controls movement.

Levodopa does not increase progression of Parkinson's disease, as many people have feared.

Unlike many mimic disorders, Parkinson's can impair a person's ability to smell. The problem can be measured with olfaction testing.

Falling as an early symptom and slowness or stiffness on both sides of the body suggest a condition other than Parkinson's.

There are no data showing that nutritional supplements such as vitamin E protect against Parkinson's progression.

Some clinical trials to test promising Parkinson's drugs require that patients not use any other medications or supplements that might confuse the studies' results. But many patients don't want to stop taking them, and that has made recruitment for clinical trials especially difficult.

Anxiety and depression often are interwoven with Parkinson's as a result of changes in levels of certain neurotransmitters like dopamine.

“Patients very often do not bring this up to the doctor, and doctors often don't bring it up,” Weiner said.

Treatments such as anti-depressant drugs do not interfere with other therapies used for the disease. The guidelines said that for some patients, the surgical strategy known as deep brain stimulation may have benefit.

Movement difficulties may be improved with regular exercise and physical and speech therapy, which often aren't considered for Parkinson's patients.

Many drugs besides levodopa can improve symptoms.

It's important that physicians monitor their patients' illness over the years to make sure their Parkinson's symptoms don't change.

Hoping for change

The extensive guidelines are controversial because some doctors might view them as an attempt to write a cookbook that dictates how they should practice, Weiner acknowledged. But the guidelines are not a doctrine, he stressed.

“We've looked at all the research in a systematic way to give order to the chaos that exists in the neurologic literature about Parkinson,” he said.

Robin Elliott, executive director of the Parkinson's Disease Foundation in New York City, touted the guidelines' emphasis on recognition of depression, sleep and memory problems in dealing with Parkinson's patients.

“If you ask a group of patients what upsets them most about this disease, it's the fatigue, depression, sleeplessness – that's disproportionate in Parkinson patients,” Elliott said.

At the UCSD Medical Center's clinic for movement disorders, director Dr. David Song said he hopes the guidelines will encourage doctors to change certain practice patterns. The recommendations “promote better awareness about what Parkinson is and is not, and how to treat it with proven therapeutic strategies,” he said.

Unfortunately, he said, there are very few neurologists with expertise in movement disorders nationwide, so many other brain-disease specialists will have to step up.

“Most of the time, diagnoses are made by general practitioners and primary care doctors,” Song said. “All have a general knowledge of Parkinson but there is variability, and for that reason misdiagnosis can occur.”

Dr. Wendy Galpern, clinical trials program director for the National Institute of Neurological Disorders and Stroke, the federal government's funding arm for neurology research, characterized the guidelines as “the most rigorous and extensive summary of the status of the field.” But, she said, it also “highlights lots of questions that aren't answered and points to many other avenues for research.”

[ol'cs]

I would like to comment in detail on your post, but i can't. I am so dyskinetic right now that even typing theses words are a real arbeit. My fingers are flying around hitting every second key wrong, and my legs are so dyskinetic that i had to change to a more solid chair so that when they bolt out from under me, i don't kick the crap out of my computer table. THis is why i haven't posted in awhile and probably won't for another while.
YOur post is invocative , and can go in so many directions. I still have a lot to say about what is posted here every day, and i try, but usually end up deleting my posts because it is becoming so difficult to type, but I'm here listening, and when I get a good hour, I would like to comment further on this post cs

[BEMM]

Just want to say I'm hoping the dyskinesia calms down, cs. for your sake first of all, and selfishly for the sake of the rest of us, so you can share your insight with us. It ts much needed.
Against common PD sense I hope you get better soon. I wish wishing worked. Very best wishes,

birte

[vlhperry]

The problem I see with diagnosing Parkinson's Disease is no one seems to take into account the cascading effects of the disease; constipation, Kidney's have to process more protein, younger woman's meds don't work around their cycle, claiming obesity is a higher risk factor for Parkinson's rather than the drugs we take causing obesity as well as the dopamine required by the pancreas to regulate glucose released into the body doesn't work so well causing the obesity. A huge list of symptoms, other than movement problems, could be made to confirm the diagnosis of Parkinson's disease. The Movement Disorder doctors and Neurologists are so focused on their specialties that many refuse to see the whole patient and think outside the box.

CS, try bringing your doses of Sinemet down. Sounds like you may be overdosing. I personaly prefer the tremors and slowness of thought, to the dyskenias. I would also suggest you see your primary care physician to be sure your kidneys are not being damaged by the amount of protein your body is putting out due to the excessive movement. Be sure to drink lots of water. Try taking some valium or other muscle relaxant instead of increasing your dosage of Carpadopa/levadopa. In the long term it will cause less damage. So what if it is addictive. If it doen't damage your body as much as Sinemet, it will be better over the long term.

Love,
Vicky

[rosebud]

You will no doubt have to work at connecting the dots on this post..possibly the side effect of not posting for awhile causing a severe traffic jam in the neuro pathways of my brain.

Firstly: is a diagnosis of something more agressive than "regular" PD necessarily a wrong diagnosis? It seems like many variations all start out on the same entry way but paths diverge and even converge over time. As an example: a woman at our last support group meeting said she was told she had Parkinson's plus. (I was away) and apparently she did not know what that meant so asked if someone could explain it to her. Of the 40 or so people at the meeting NO ONE knew what it meant! If I had been there I could have told her the cheery news. Along these same lines a friend was diagnosed with MSA after her PD got totally out of hand, along came a neuropsychiatrist who changed her antidepressant and she's back to a PD diagnosis. The moral of the story is you can never be sure because as was previously mentioned an autopsy is the definitive diagnosis, and I wouldn't even bet money on that ...but by then its irrelevent.

Moving right along here: I don't know about the USA, but in Canada it's best to not mess with your diagnosis if you get any kind of check from the govt. because they tend to want to re-evaluate you and we can all live without that stress.

I stopped giving people advice about their situation, because they do what they do anyway and its a waste of time and energy. If they ask me what I do about whatever the problem might be, I tell them and they are welcome to try it or forget it. I still cringe when I see people do things that are basicly just plain stupid,(but I do not throw stones because I still do stupid things too) Stupidity seems to run rampid in the human race.

I've seen enough Neurologists in the last ten years that I've learned it's the luck of the draw if you get one that graduated at the bottom of his class, and blessed indeed you are to get one that graduated at the top of his class. Or maybe thats the paradox... The brightest are sometimes the most arrogant and conditioned to think traditionally while the lower level ones may be the rebels who cause change. So life being what it is, either way you could be lucky or not. Life is an very interesting experience.

I doubt if guidelines will change or help anything. For my money, I suggest learn all you can and cull cull cull to decide what works for you and your little canoe on Parkinson's pond. Take everyones advice with a grain of salt and possibly a bottle of pepto bismol.

One observation I have made is that without exception the people with the least problems with their PD are people who just go about their business as if it doesn't really matter. That personality type that is rarely flustered about anything. They are always pleasant and unbothered by these little inconveniences and their PD never seems to be a big deal. I look at them and wonder "where did you come from?"

I have no idea if I've addressed the theme of this thread or not. Diagnosing PD is a hit and miss game...I doubt that will stop as perception and observation and concrete evaluations are all very individual experiences in our human brains, wether you went to med school or not. My vote still goes to intuition (yours) keeping a good diary, and trial and error and last but not least a good nights sleep! If you get it wrong you may die, but on the other hand we're all going to one day anyway. Then we can have tea and discuss it