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Medical Forum / Diseases and Disorders / Alzheimer's / October 2004false diagnoses of alzheimers or parkinsons really NPH
Hi Friends, I just watched "60 minutes" tonight and they told of people who were falsely diagnosed with alzheimers or with parkinsons who turned out to really have NPH (Normal pressure hydrocephalus). The only way this can be diagnosed is with a Cat Scan or an MRI. It causes a characteristic three symptoms. Confusion, a shuffling gait, and incontinence. One man was diagnosed with alzheimers and he went to 15 different doctors over a ten year period, till he finally found out what exactly was really wrong with him. A scan revealed that while a normal person should have about 3 oz. of fluid in their brain, this man had over ten ounces, which was causing intense pressure in his skull, creating the symptoms that caused him to go for help in the first place. A shunt was installed in a 45 minute operation to allow some of the excess brain fluid to escape and he became 'normal' again. Just another reason why it is an EXCELLENT idea not to simply guess at a diagnosis, but to go for proper diagnostic testing. Even with proper diagnostics in place, not every doctor is able to recognize this problem, which is REVERSIBLE! Just the possibility that a person could have a reversible problem, that they could live like a normal individual again, it is astonishing to me that so many try to hide their deficits, or to fail to get proper diagnostics in place so they know what they are dealing with. I don't know if the CBS website has further information on this, but it is certainly worth looking into. The doctor in the segment commented that not enough doctors are trained to know how to recognize this problem and that MANY people were falsely diagnosed with alzheimers and with parkinsons when they really had a reversible condition, that was easily corrected with a shunt.  SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, Grayson's MRI was not specific enough to know for sure if he had normal pressure hydrocephalus. That's why we (and he) agreed to have the surgery to measure the fluid in his brain to see if he needed a shunt. As you said, that could have caused part or all of the problem diagnosed as AD. However, when the surgeon went into the skull to measure the fluid, Grayson started bleeding and it took 5 hours to get it stopped. They had to just stop then, and it left him an invalid. He died 8 months later. But I'm still glad we did it. I'd much rather he go like that than live for years in the last stages of AD. Gwen > Hi Friends, > [quoted text clipped - 33 lines] > diagnosed with alzheimers and with parkinsons when they really had a > reversible condition, that was easily corrected with a shunt. > Evelyn, Grayson's MRI was not specific enough to know for sure if he had > normal pressure hydrocephalus. That's why we (and he) agreed to have the [quoted text clipped - 8 lines] > in the last stages of AD. > Gwen Hi Gwen, That is a sad situation, but I can understand how you feel. I thought about how every so often we have people posting here with loved ones showing signs of dementia, but not getting a full diagnostic testing done, and that is why I posted the synopsis of the CBS segment. Since NPH is treatable and the dementia caused by it is actually reversible, it stresses the importance of getting a proper diagnosis. My mother had a shunt installed a couple of years before she died, (and it was successful). Apparently she had some pressure building up in the brain fluid. My mother suffered from awful headaches for many years and I think the diagnosis and treatment came from her attempts to discover the cause. Oddly enough the shunt never stopped her headaches. Ultimately she died of heart related problems. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >> Hi Friends, >> [quoted text clipped - 43 lines] >> diagnosed with alzheimers and with parkinsons when they really had a >> reversible condition, that was easily corrected with a shunt. So true. Its really astonishing how many people have doctors who are sloppy and cavalier about diagnosis. It is absolutely crucial to have the person properly assessed and diagnosed by a real specialist in dementias, such as a neurologist (i.e. a GP may make the initial check, but won't cut it for the comprehensive and definitive work up). I just can't imagine how furious and distraught I'd be if I had a loved one who was labelled as having "senile dementia" or a "bit of Alzheimer's" and it turned out later they had something else entirely that could have been dealt with and perhaps reversed. So much unnecessary distress and suffering for everyone. It does happen all the time - think of how many people we have who come to this support group and tell us that their loved one has not been properly checked out and the doctor isn't pushing for any further checks, or worse, is resisting the idea that its necessary. For me, the basic premise has to be that you approach confusion in the elderly the same way you approach it in a 45 year old - with recognition that something is alarmingly amiss that needs immediate attention and investigation. Mary G. > Hi Friends, > [quoted text clipped - 5 lines] > causes a characteristic three symptoms. Confusion, a shuffling gait, and > incontinence... Evelyn, thanks for posting this. My father was misdiagnosed year ago as having Parkinson's, the diagnosis later changed to a benign essential tremor that does run in the family. I went to a website on the subject , and of a list of 15 symptoms, my father has 12. Definitely something to follow up on. I should add that the site I looked at also says that a Cat Scan or MRI cannot definitively diagnose NPH, but that it may show ventricular enlargement that may *suggest* NPH. My father had both scans last December and the doctors reported no abnormalities (well, the first Cat scan had what they thought was an aneurysm that was later not found), but I think they were first and foremost looking for vascular problems or tumors and might have missed enlargement in the ventricles of the brain. http://www.emedicinehealth.com/articles/39837-5.asp SignatureRobert >> Hi Friends, >> [quoted text clipped - 27 lines] > have missed enlargement in the ventricles of the brain. > http://www.emedicinehealth.com/articles/39837-5.asp Dear Robert, So often we hear of loved ones who refuse or hesitate to be tested when there are cognitive issues involved. I posted that because it could be an incentive to get tested, knowing there are treatable and reversible conditions that also cause cognitive problems, but without testing, no one would know. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >Subject: false diagnoses of alzheimers or parkinsons really NPH >From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 6 lines] >diagnosed with alzheimers or with parkinsons who turned out to really have >NPH (Normal pressure hydrocephalus). I heard about that a couple of years ago. I got on their mailing list (I'm still on it). I asked her doctor about it and he said she was screened for it when she had her CAT scan. I was a little disappointed because it's reversible. ___ "Oh I like this idea...Oh yeah. This can't miss." -- Jerry Seinfeld Rose, a cat scan is not sufficient. After Grayson's cat scan, he had an MRI. It still did not give enough detail to be sure; that's why the measurement surgery was scheduled, Gwen > >Subject: false diagnoses of alzheimers or parkinsons really NPH > >From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 14 lines] > ___ > "Oh I like this idea...Oh yeah. This can't miss." -- Jerry Seinfeld Thought you would be interested in this http://www.lifenph.com/content/symptoms.htm I really like that they have an actual clip of someone with the characteristic gait problems that often go with NPH. Nothing like a visual demonstration - and I HAVE seen people with this gait on dementia wards which makes you wonder if they had been correctly diagnosed. Mary G. |
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