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The real “timebomb” for dementia is the number of unsafe diagnoses from non-specialists
In a popular group on “Facebook”, somebody has written the following:
“This will be my last message on this group as my husband has finally received the diagnosis that we have been waiting for.
For years he has been diagnosed with dementia, firstly Lewy body Dementia and then for the last 2 years it has been FrontoTemporal Dementia but now we know the truth – he has Lyme Disease caught from a tick bite he didn’t know he had during our trip to The Rockies in 2003. For the last 10 years he has been seeing a procession of medical professionals including Neurologists, Psychologists and Psychiatrists but they have all said that he didn’t typically fulfil the criteria for any of the conditions that he has been diagnosed with but they have treated him as though he did, therefore he has had a boat-load of medication that his body didn’t need. If he had been tested for Lyme when he first started to baffle the medical profession then it could have saved us many years of traumatic symptoms, incorrect treatment and medical professionals openly saying that they felt his symptoms were ‘all in his head’, ‘nonsense’ and a ‘childish ploy for attention’. I THINK NOT ! Unfortunately we have had to go private to get the testing done but now we have a definitive diagnosis and a treatment plan. – it is typically successfully treated with an extended course of intravenous antibiotics and supplements to support the body through the treatment period. There is now a very bright light at the end of a very long, very dark tunnel.
I do appreciate that many of you will not agree to this message appearing on here but it is entirely possible that may be a few who have been in a similar position to my husband and I would urge you to consider the possibility of obtaining private testing (the tests are sent to Germany and USA as the tests done there are more sensitive and accurate than in UK) in the likelihood of having had a tick bite at some point. I have attached a short video that explains the problems with getting Lyme diagnosed and once again apologise if this message seems inappropriate.
http://www.endowmentmed.org/pdf/updatelyme.pdf“
The current Government, in partnership with the Alzheimer’s Society, is trying to improve the diagnosis rates of dementia.
The medical profession has been consistently warning, on deaf ears, that every misdiagnosis of dementia is potentially a tragedy.
For every incorrect diagnosis of dementia, a person is being denied treatment for the correct diagnosis.
For every incorrect diagnosis of Alzheimer’s Disease, a person is being denied treatment for a different, but correct, cause of a cognitive problem.
It is dangerous that this policy exists in England, which promotes ‘dementia awareness’, but which has not improved resources for specialist clinical services for the diagnosis, investigation and management of dementias.
Dementia is part of a wide ‘differential diagnosis’, meaning that many conditions can mimic dementia particularly in the elderly.
The infective agent of Lyme disease is the spirochaete Borrelia burgdorferi, usually transmitted in tick bites.
The disease occurs sporadically in parts of North America, Europe and Asia, but true prevalence is unknown. Infection can lead to a whole manner of presentations in any part of the nervous system.
Clinical symptoms include an acute rash (erythema chronicum migrans) at the site of the bite within a month, which is indicative. Relapsing, migratory, large-joint arthropathy and carditis may occur.
Overall, 10–15% of affected individuals develop neurological symptoms. Cognitive impairment, inattention and emotional lability may be present, with usually mild chronic confusional state.
Subjective memory loss has been suggested but a clear dementia syndrome is very rare is very rare.
Specialist testing would have been necessary to identify this in the NHS.
For an investment equivalent to the cost of ‘Dementia Friends’, £2.4 million, it’s quite likely that a disaster like this would have been avoided in this jurisdiction.
The timebomb which is ticking is not the numbers of dementia.
Do pardon the bad pun.
In this jurisdiction, evidence now points to a falling prevalence of dementia cases.
The real “timebomb” for dementia is the number of unsafe diagnoses from non-specialists.
There are fewer than 365 days until the next general election on some happier news.
LegalAware podcast 1: Ataxia and welfare benefit cuts
Welcome to the first ever LegalAware podcast. I am sorry for the sound quality. There are two reasons for this. Firstly, it’s recorded on a very busy Regents Park Road, which can be busier than the #m6. Secondly, I am still getting used to the #yeti microphone and Audacity. Notwithstanding these problem, Alan (@AlanROYGBIV) joins me for a explanation of the neurological condition of ataxia, which we both have, what Ataxia UK is, and how the welfare benefit cuts are a tragedy for society, including disabled citizens like us.
Brain size clue in Alzheimer's disease
The brains of people diagnosed with Alzheimer’s disease start shrinking up to a decade before symptoms appear, a new study finds.
Researchers from Rush University Medical Center in Chicago and Massachusetts General Hospital in Boston performed brain neuroimaging scans on older adults with no signs of memory loss.
Of the 33 people in the Mass General group, eight developed Alzheimer’s didease over the course of 11 years. In the Rush group, only seven of 32 people followed for an average of seven years developed the disease.
About 55 percent of those whose brains were in the upper tertile (third) of atrophy developed Alzheimer’s disease, while none of those whose brains in the bottom tertile (little or no atrophy) developed Alzheimer’s disease.
Among those with moderate amounts of atrophy, about 20 percent developed the disease.
They could differentiate those who would decline from those who would remain healthy, according to the senior study author Leyla deToledo-Morrell, director of the graduate program in neuroscience at Rush University Medical Center. Based on the atrophy measurements, they claimed that they could even determine how quickly they were going to develop Alzheimer’s disease.
Doctors have long known that Alzheimer’s is an insidious disease, and that changes in the brain begin long before the first symptoms become evident, said Dr. Jeffrey Burns, director of the Alzheimer and Memory Program at University of Kansas Medical Center. This suggests, along with other studies, that Alzheimer’s disease neuropathology is likely present years, if not decades, before the emergence of symptoms.
What’s probably happening is that biochemical changes in the brain that are only partially understood cause degeneration of brain cells. Over time, the cells begin to die off, leading to structural changes in the brain tissue, or atrophy. Specifically, people in the study who would later be diagnosed with Alzheimer’s disease were more likely to show cortical thinning, or shrinkage, in several brain regions, including the medial temporal lobe, temporal pole and the superior frontal gyrus, which prior research has implicated in the early stages of Alzheimer’s disease. The amount of atrophy was much, much, much less than in a person with Alzheimer’s disease, but because each one who developed Alzheimer’s disease showed it, the results are extremely significant.
Eventually, the hope is that one day there will be drugs to slow the progression of the disease – there are none currently available – and being able to diagnosis Alzheimer’s early would mean people could start treatment before they have experienced significant declines.
If doctors can identify people at risk of the disease, they would be at much greater benefit from receiving treatment, rather than people who have already developed Alzheimer’s, who already have a certain amount of cell death and you can’t really rescue those cells. Though the number of participants in the study was small and the findings need to be repeated in larger populations, it is arguably remarkable they saw changes this clear with this small number of cases.
A a second study from the same journal may have practical applications immediately. The study found that vascular disease risk factors, such as hypertension, diabetes, cardiovascular disease and high cholesterol, may raise the risk of Alzheimer’s disease. The good news is that treating those conditions lowered the risk of Alzheimer’s disease. Chinese researchers followed 837 people over age 55 with mild cognitive impairment, which is often a precursor to Alzheimer’s, for five years. During that time, 298 developed Alzheimer’s, while the others still had mild cognitive impairment but had not progressed to Alzheimer’s. People who were treated for all of their vascular disease risk factors were less likely to progress to Alzheimer’s disease than those who weren’t treated or who only had some of their risk factors treated, according to the study. This study appears to imply that vascular disease has a real effect on the manifestation of Alzheimer’s disease. The vascular disease is damaging the brain and is probably causing the individual to have lowered resistance to the pathological effects of Alzheimer’s disease. Cholesterol-lowering medications, blood pressure medications and lifestyle changes such as losing weight and exercising can all help lower vascular disease risk factors.
