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Friends, Misdiagnosis of PD is easy. Based upon autopsy reports of the few PD patients autopsied after death, about 30% showed no evidence of lewy bodies, the sure check for PD. The missed diagnosis of PD is horrendous. Twenty years went by before I was correctly diagnosed - I think. Over the first few years, I knew something was amiss, but did not push for a diagnosis. For about five years I did push. The internist I use said I might have PD, but he didn't think so... Two neurologists couldn't come up with PD. One seemed to think of nothing but drunks with the DT's. The other just didn't know. I tried a chiropractor who saw me three times a week for a couple of months. He saw the effect of the PD increasing and was scared he might have done something wrong and caused harm to me with his manipulations. He said it might be ALS and suggested that I try finding out what was wrong elsewhere. I went to the local university library and ruled out almost everything else. PD was the only reasonable diagnosis left. I went to the neurologist I had used earlier and requested a prescription for 28 Sinemet 25/100 tablets. He said he did not think Sinemet would help, but he wrote the prescription anyway. You can guess the rest. Why is the diagnosis of PD missed so often? One reason is the way medical schools teach. To teach the students about PD and how to recognize it, show them a real case in the teaching hospital. Which PD patient does the professor show to his students? He picks the best one - the stage 4 or 5 case with all the symptoms and a life expectancy of hours rather than the stage 1 or 2 PD patient who has years of problems ahead. Picking the worst PD patient for the rounds [medical school show and tell] is natural, but it is a disservice to the students and future patients. If I were asked to explain what a rose is, would I show an old rose bush with lots of black spot, mildew, few if any blooms, and hundreds of aphids and Japanese beetles? I would show a perfect hybrid tea or grandiflora at the peak of bloom with no bugs. Will Johnnston A.P.D.A. DelMarVA Chapter Pres. 4049 Oakland School Road Salisbury MD 21804 USA 410-543-0110 ---------- From: Jim Slattery <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Subject: Re: Misdiagnosis Date: Sunday, January 24, 1999 10:31 PM Hi Jennifer, >what is the problem with >the medical community that they seem to completely overlook PD as a >possibility, especially in younger patients? In our research (report to be launched 9th February 1999) we identified a great ignorance of PD, its symptoms, and its effects, among all health professionals, whether specialist neurologists, general practitioners, pharmacists, dentists, nurses, physiotherapists, etc., etc. Perhaps the main reason for this may be identified from a study commissioned by the Australian Government from the Australian Science and Technology Council. The report, entitled "Management of neuro-degenerative disorders in older people 2010", says in part, "The study found that there is grossly inadequate education and training in the areas of gerontology and aging in university medical schools. This has resulted in medical practitioners having poor skills for the management of NDDs (neuro-degenerative disorders) in older people". So true, but notice that even the writers of this report fell into the trap of identifying NDDs, which include Parkinson's Disease, as being only disorders of OLDER people! I might point out here that the term "older people" in medical research-speak usually means those aged 70 and over! (Perhaps because many researchers are themselves aged 60-70? <grin> ) The eventual diagnosis of my own condition was complicated by the fact that I had had a bad motor accident shortly before I began noticing symptoms of PD. I was pursuing an insurance claim, which, before it was settled, resulted in me being referred by one side or the other in the claim to TWENTY-SEVEN different doctors, NONE of whom suspected, or even hinted at PD. Most seemed to favour a psychological or psychiatric disorder. As for that, a paper by Lang AE et al, (Department of Medicine (Neurology), University of Toronto, Ontario, Arch. Neurol. 1995 Aug;52(8):802-10, states that Parkinson-like symptomology resulting from a primary psychiatric disorder is a very rare event, if seen at all. Much more common is psychiatric disorder symptomology masking underlying PD. I was 44 at the time, and I think that this is a large part of the problem - most health professionals taught before, say, 1990 (and many -most?- since), were taught, in the wording of a popular medical text, that Parkinson's is " a disease of the sixth decade", in other words, of people 60 and over. Yet there is much recent evidence, scientifically researched and published in major journals such as the "New England Journal of Medicine", stating that onset before the age of 30 is decidedly rare, but thereafter, both incidence and prevalence of PD rise with increasing age. Within any given studied population, as many as 10% of patients admit to an onset before the age of 40, and a further 20% develop symptoms of the disease before the age of 50. The mean age of onset is still in the mid-50s, with approximately 40% developing the disease between the ages of 50 and 60, whilst the remaining 30% experience onset over the age of 60. In other words, the popular view is the opposite of the truth! It will not be until doctors and para-medical health professionals are educated to the fact that PD is common under 50, that this situation will change. Part of our ongoing commitment to our project will see kits produced for a number of health specialities, explaining the complexities of PD treatment and management, and pointing out that young-onset PD is an increasing incidence. Jim +---------------------+ | Jim Slattery | | [log in to unmask] | |---------------------| | Webmaster | | Central West PD Web | | [log in to unmask] | +---------------------+