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©2011 Proventus A charity registered in England & Wales No 1131517
Showing posts with label Multiple Sclerosis. Show all posts
Showing posts with label Multiple Sclerosis. Show all posts

Saturday, 24 March 2012

Warmer outdoor temperature is associated with worse cognitive status in Multiple Sclerosis

Victoria M. Leavitt, PhD, James F. Sumowski, PhD, Nancy Chiaravalloti, PhD and John DeLuca, PhD
+ Author Affiliations

From the Kessler Foundation Research Center (V.M.L., J.F.S., N.C., J.D.), West Orange; and Departments of Physical Medicine and Rehabilitation (V.M.L., J.F.S., N.C., J.D.) and Neurology and Neurosciences (J.D.), UMDNJ–New Jersey Medical School, Newark, NJ.
Correspondence & reprint requests to Dr. Leavitt: vleavitt@kesslerfoundation.org

ABSTRACT
Objective: Patients with multiple sclerosis (MS) have more clinical exacerbations and T2 lesion activity during warmer weather. The current study is the first to investigate whether outdoor temperature is related to cognitive status across patients with MS (cross-sectional analysis), and whether cognitive status fluctuates with changes in outdoor temperature within patients with MS (longitudinal analysis).


Methods: For the cross-sectional analysis, 40 patients with MS and 40 healthy control (HC) subjects were recruited throughout the calendar year. Cognitive status (processing speed, memory) and outdoor temperature were recorded for the day of testing. We calculated partial correlations between cognitive status and temperature for patients with MS and HCs, controlling for demographic and disease variables. For the longitudinal analysis, cognitive status and outdoor temperature were recorded at baseline and 6-month follow-up in a separate sample of 45 patients with MS. We calculated the partial correlation between temperature and cognitive status at follow-up, controlling for baseline temperature and cognitive status (i.e., whether temperature changes are related to cognitive changes within patients with MS).


Results: Cross-sectionally, warmer temperature was related to worse cognitive status in patients with MS (rp = −0.45, p = 0.006), not in HCs (rp = 0.00, p = 0.984). Longitudinally, increased outdoor temperature from baseline to follow-up was related to a decline in cognitive status within patients with MS (rp = −0.39, p = 0.010).


Conclusions: Cognitive status in patients with MS is worse on warmer days, consistent with a previously established link between heat and lesion activity. Our findings have implications for clinical trial planning, treatment, and lifestyle decisions. We discuss cognitive status as a potential marker of quiescent exacerbations.

http://www.proventus.org.uk/page503.html#Warmer

Monday, 5 March 2012

Hookworm Research Trial for RRMS

Researchers are recruiting people with relapsing remitting MS for a study that will look at the treatment potential of infecting people with hookworms.


The study aims to recruit 70 people from the Nottingham and Derby areas who will be split into two groups. Half will be infected with hookworm larvae via a plaster applied to the arm.

The other group will receive a placebo containing no hookworms.

The researchers will monitor the effect on cells in the immune system associated with the inflammation experienced in RRMS.

Studies of parasitic worms have been undertaken in several conditions, including asthma and Crohn's disease and hookworms and whipworms have previously been used in small studies in MS.

It is considered thought that the presence of the parasite in the body may stop the immune system from becoming overactive, thus reducing both the severity of symptoms and the number of relapses.

ClinicalTrials.gov Identifier NCT00630383 http://www.clinicaltrials.gov/ct2/show/NCT00630383

Saturday, 3 March 2012

Getting Multiple Sclerosis mortality statistics right

Statistically it is recorded that approx. 780 people died in the UK as a direct result of MS during 2009 to 2010. It is very difficult to obtain exact figures but currently this is as close as we can get.

Please give considered thought to this.

Approx. 20% of people with MS “have a considerably shortened life"

The reason for the general misconception about the terminal nature of MS may be found in that:- "Routine mortality statistics are usually based on identifying a single cause for each death.

This is the 'underlying cause of death', defined by the World Health Organisation (WHO) as: A) the disease or injury which initiated the train of events directly leading to death or B) the circumstances of the accident or violence which produced the fatal injury Therefore the disease/condition which initiated the train which directly leads to death is recorded as a respiratory problem (usually aspiration pneumonia) or a urinary tract infection.

Because both of these events are actually secondary to MS it makes more sense for cause of death to be recorded as an event secondary to multiple sclerosis which should be recorded as the primary cause.

This would make life a lot easier for MS patients trying desperately to meet continuing healthcare criteria for the purpose of receiving funded care.

This is considered to be an important point, an unconsidered point, which may require greater clarification.

Proventus is asking our members, followers to give considered thought to this statement and expand the material.

Wednesday, 29 February 2012

The principle determinant of long-term MS disability is neuronal degeneration

The cause of MS is unknown, as is the exact pathogenesis (The development of the disease, the origin of the disease and the chain of events leading to the disease). 

Multiple Sclerosis is clinically a heterogeneous condition, (not uniform in structure or composition), and still defies exact definition.
 - Its speed of progression varies from person to person.

- The severity of its symptoms varies from person to person.


- The variety of symptoms experienced varies from person to person.

The areas of the body affected by the progression of the disease vary from person to person.
The only consensus of opinion appears to be, is that multiple sclerosis, is a description of what is physically happening to a person’s central nervous system when they develop this condition known as MS.

However, are all of the types of MS the same condition or are they differing conditions with the same, or similar symptoms?

The majority of people initially diagnosed with this condition have a type of MS labelled “Relapsing Remitting”. During the remitting stages of this condition the symptoms may complete disappear of lessen in their intensity.
The brain is able, to an extent, to repair itself and reroute functions. How effectively it is able to do this is influenced by how much flexibility (plasticity) it has.

When the brain routinely reorganises itself and reroutes functions it might explain why some MS exacerbations may not immediately cause observable symptoms.
MS activity in the brain may be concealed behind this ability of the brain to repair and reroute itself. If this is so it could be argued that an MS person isn’t necessarily doing better because the condition is in remission. They may be doing better because the brain is repairing or attempting to repair damaged areas as well as creating new neurological pathways, while the conditions progression continues.

This suggests a strategy is required, to help manage the condition more effectively.

Monday, 20 February 2012

The occurrence of Multiple Sclerosis, is significantly on the rise in India

The occurrence of Multiple Sclerosis, is significantly on the rise in India where it is now “largely under-recognised and under-diagnosed”, Dr Richard A Rudick, a renowned neurologist said on Saturday.
While the disease prevalence rate in the US is around one per 1, 000 population, almost as many people in India “may be affected” by this disease, Dr Rudick, Director of the Mellen Centre for Multiple Sclerosis Treatment and Research, Department of Neurology, Neurological Institute, Cleveland, USA, said here.
Delivering the prestigious T S Srinivasan Endowment Oration, which brings to India world leaders in the field of neurology every year, he said such a prevalence level “could make its occurrence rate in India exponentially much higher than that of the US.” Stating that the disease, which is on the rise all over the world, was a prototype “auto-immune disease” that affects the brain and the spinal cord, he added that its most recognisable symptoms include--visual loss that can last for days or weeks, inflammation of the spinal cord that can manifest as numbness from the legs right up to the hip region, difficulty in walking and loss of balance while doing so.

No longer untreatable?
However, neurologists across the world in the last 15 years have made dramatic progress in treating the disease than in the last 200 years, Dr Rudick said. “The good news is that it is no longer untreatable. “With today’s medical advances, we can completely control the disease in about 30-50 per cent of the patients,” emphasised the neurological expert who has played a key role in several clinical trials and in developing new imaging measures for it.
Even as there was growing awareness about this disease across the world, he said it affect women more than men, particularly in the age group of 15-50 years. People in the northern latitudes who lived farther away from the equator were more prone to get this disease.
Source: Deccan Herald Copyright 2012, The Printers (Mysore) Private Ltd (13/02/12)
Comment
Recognised hot spots of MS have been established in Bombay and Poona for some while and gathering statistical evidence as to the prevalence of MS worldwide has always been weak. Does this undermine the long held view that people who live further away from the equator were more prone to get MS? Perhaps better diagnosis and improved reporting methodology is uncovering what has always existed? Isn’t the prevalence rate in the US approx. 1:700 not 1:1000 as quoted by Dr Rudick?
http://www.proventus.org.uk/page500.html

Friday, 17 February 2012

Visual Pathway Axonal Loss in Benign Multiple Sclerosis: A Longitudinal Study.

Benign MS - A type of relapsing-remitting multiple sclerosis in which few relapses occur. The relapses tend to produce sensory symptoms, which go away and leave very little, or no residual damage or disability.
However, people with “Benign MS” have RNFL axonal loss that is as marked as that of typical MS and have reduced vision and quality of life. While overall neurologic impairment is mild, visual dysfunction, not well captured by the EDSS, accounts for a substantial degree of disability in benign MS.
Benign multiple sclerosis is traditionally defined as Expanded Disability Status Scale (EDSS) score ≤3 and ≥15-year disease duration, and is thought to follow a milder clinical course
It describes the problem in those who have had MS for fifteen or more years without picking up any enduring disability, with negligible neurological symptoms and no serious or continuing disabilities.
Usually those classified with Benign MS have mild, infrequent, sensory exacerbations with a full recovery.
Benign MS may only be positively identified after there is minimal disability 10 to 15 years following its official onset.
Some classified with Benign MS will eventually experience disease progression; their course of disease may change and evolve into the progressive stage of MS.
Benign multiple sclerosis is one of the least common forms of the disease.http://www.proventus.org.uk/page647.html

Wednesday, 2 March 2011

A Letter To The Times

A letter written by a Proventus trustee in response to a report on disability benefit reform.


To : The Editor, The Times.

Dear Sir,
               I was dismayed to read the report on ‘benefits reform’ (Sat. Times pp28) and how it is being conducted in the Burnley pilot area. While it is vital to expose the benefit cheats in our society, it is equally vital to show the greatest respect to those suffering from such debilitating and life-shortening diseases as MS.
    David Sanderson’s report begs the question as to who these “healthcare professionals” are. Are   these examining officers expert enough to understand the full details of how MS affects the human body? There are up to seven types of MS and range from relapsing-remitting to malignant in aspect. Dutch research, about three years ago, confirmed that stress exacerbates MS, often permanently, and the way in which Ann Phillips was treated is nothing short of disgraceful.
    Appoint expert medics to the investigating panels and similar judges to hear the appeals or the health problems of genuine sufferers will only be compounded, and creating extra expense over increased care costs in the community.
         Yours sincerely,
John Slack, Chair of Trustees for Proventus (a neurological & auto-immune disease charity)


This letter has not been published & we have yet to get a response from the Times.

Monday, 28 February 2011

Caregivers and quality of life in the US

A recent "study" on quality of life issues for care givers and MS people left me in a state of shock, anger and immense frustration. Was I shocked, angered and frustrated to learn that (and this is a direct quote from the article):
"Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS. "

No. I was shocked, angered and immensely frustrated at the squandering of precious research funds on what I consider to be "junk science". WHY are resources ALLOWED to be diverted from important issues such as the causes and cures of disabling medical conditions in order to "study" what is obvious to the average person with any common sense????
If I hit my thumb with a hammer, IT WILL HURT. I don't need a study to tell me this or to confirm any "anecdotal" evidence of the obvious. STOP THIS NONSENSE! Our precious resources must be used for meaningful science or, at the very least, to provide the very "interventions to reduce caregiver strain and burden in those at risk" recommended by this study.
contributed by K (USA) 

Wednesday, 23 February 2011

Multiple Sclerosis The Hidden Disease

It seems that those who are affected by Multiple Sclerosis might as well be invisible when one considers how little is done for them and how little progress has been made over the last twenty to thirty years, to develop viable treatments for this debilitating condition.

My wife was diagnosed as having MS in 1991, however, she did experience symptoms similar to those associated with MS about fourteen years earlier but the specialist at that time came to the conclusion that she did not have MS. No reasons were given, but fortunately she had no further problems until 1991, when she was diagnosed after temporary loss of vision in one eye. Although she is not wheelchair dependent, she has the difficulty in getting about and requires help with most things around the house.
From the time she was diagnosed, my wife has only been seen by a neurologist four or five times. Furthermore, she has not had any treatment from the NHS, apart from two courses of intravenous steroids, of which, only the first was effective. Because MS is an ongoing condition, even physiotherapy is not available, at least in the area we live.
My wife and I are fortunate that we can, in the short term, self fund Aimspro, which is making a noticeable difference in my wife’s case, but why should we be forced to self fund? Like most those, I have paid taxes and National Insurance.
Unlike Cancer Research, how often do we hear appeals to raise funds specifically for research into understanding and finding viable treatments for Multiple Sclerosis? NEVER! Multiple Sclerosis is clearly seen as a low priority condition but somehow this has to change.
Although there seems, at this moment in time, to be several potential treatments at various stages of research, I believe until a much greater effort is made in understanding the condition, it could be a long time before treatments are widely available to all in need. Therefore, I feel it is important to stimulate somehow interest in Multiple Sclerosis and raise the necessary funding to finance meaningful research.

While those affected by MS remain invisible and silent, they will continue to be considered a low priority in the overall scheme with respect to the National Health Budget. However, a way has to be found to raise awareness of the desperate needs of those affected by MS so that they are no longer INVISIBLE but deserving those who are entitled to their share of NHS services.

Gordon Ellis, Glasgow

Thursday, 17 February 2011

Positive Mental Attitude

A few words from a gentleman who has suffered with MS for 41 years


I have had MS since 1968 ( 41 years ) The first 22 years were Relapsing/Remitting, mainly in remission - I was very lucky. However the last 19 years have been Secondary Progressive, but I have NOT let it affect my Quality of Life (well as little as possible). I believe that this has been due to PMA (Positive Mental Attitude). I have MS but MS has not got me. OK I am now in a wheelchair, but I look on the wheelchair as an aid and not a necessity. OK there is no cure for MS today but there may be a cure tomorrow. MS is NOT the end of life as we know it, It is the beginning of a NEW way of living life.
Bill Irving - Surrey - UK