Mom's Story

A discussion about Mom's Story and MS…

Archive for the tag “diagnosis”

01 May 2016

Multiple Sclerosis in Russia

From the Russian Multiple Sclerosis Society (http://www.armss.ru/)

Multiple Sclerosis (MS) is a severe chronic disease of the brain and spinal cord, which affects relatively young people and oftentimes results in disabilities. Over recent years, MS has tended to rapidly grow in frequency with onset among younger patients. This was caused by not only better diagnostic facilities for MS but also improvement of the quality of epidemiological research, yet the actual growth of the disease is also a reason. Currently, there are over 150,000 patients in Russia, of whom no less than 75% are already disabled. While including the families of patients and disabled people, MS as a problem involves from 750,000 to 1 million Russian citizens.  At present, there are about 3 million people with MS in the world. The MS frequency in Russia is from 30 to 100 per 100,000 of general population.

In Russia,

70%    families break up after one of the spouses is diagnosed

29%    patients have not left their homes for over a year

78%   patients are females under 50

75%    patients have disabilities

35%    are young people under 28

6%     are children aged 10-15

Medical and social support for PwMS is a challenging and complex task, which cannot be resolved otherwise but in close cooperation between civil institutions, as well as expert and public ones. Since the course of the disease is unpredictable with the end deemed practically inevitable, while diagnostic facilities were untimely and pathogenic therapies were highly expensive and disabilities growing, some time ago patients with MS would not often get an adequate medical and social treatment as they were regarded as having no prospects. With introducing a range of medicines in the 90s of the 20th century to modify the course of multiple sclerosis (or, disease modifying drugs – DMDs), then, new medical and rehabilitation techniques, patients got a hope for the pathological process development to slow down, to prolong physical activity and working ability and quality of life.

However, MS requires overall significant resources employed being financial, organizational, scientific-methodic, social. In the 90s of the last century, the problem remained little-known and was considered by professionals as a specific scientific-medical one. For a long time, authorities and professional and general communities underestimated its high social significance and the necessity to concentrate on considerable efforts to fight it.

Nurse assistance services have been set up in 55 regions that carry out target medical maintenance of patients receiving highly expensive medicinal therapy. Nurses render consulting medical and social assistance to people with MS.

The crowning achievement of the ARMSS is that it has managed to translate, in the general public mind, MS as a problem from the ‘scientific and medical’ category into the ‘social and economic’ one, as well as to improve the quality of rendering medical assistance to Russians suffering from MS.  The most outstanding result of this understanding became the guaranteed provision of highly expensive medicines (DMDs) for patients with MS at the expense of federal and regional budgets, which had been unthinkable of in the early 2000s.

The improvement of quality of life of people with MS is a result of combined activities of structures of civil society and authorities.

(after:  Patient voluntary organizations’ role in improving the quality of rendering social and medical assistance to communities. by Yan V. Vlasov – MD, Mikhail Al. Kurapov, Mikhail V. Churakov – PhD)

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23 Apr 2016

Antihistamine Shows Evidence of Stimulating Myelin Repair in Small Phase II MS Study – More studies needed before the full benefits and risks of this approach can be verified

Summary

  • In a small, phase II clinical trial, the oral antihistamine clemastine modestly improved the transmission of electrical signals in the optic nerve in participants with MS who had optic nerve damage.
  • The improved transmission indicates that nerve-insulating myelin was repaired along the nerve pathways.
  • Clemastine is an over-the-counter allergy medication. Doses in this trial exceeded the maximum recommended for over-the-counter use. Clemastine affects a range of targets in the body, and involves the risk for side effects, particularly at increased dosages.
  • This team is planning an additional trial to further determine the safety and effectiveness of clemastine, as well as studies to identify compounds that may enhance myelin repair and cause fewer side effects.
  • Clemastine was identified as having possible myelin-repairing properties through innovative preclinical research conducted by National MS Society-funded Jonah Chan, PhD, who went on to become first recipient of the Barancik Prize for Innovation in MS Research for this pioneering work.
  • Preliminary results will be presented by the clinical trial’s lead investigator Ari Green, MD (University of California, San Francisco), at the annual meeting of the American Academy of Neurology being held in Vancouver, Canada, April 15 to 21.

Background: In MS, the immune system attacks and destroys myelin, the fatty substance that surrounds and protects the nerve fibers, and the nerve fibers can also be damaged. Current therapies are largely aimed at dampening the immune attacks. However, a therapy that repairs damage to myelin and nerve fibers is also necessary.
A team at the University of California, San Francisco led by National MS Society-funded Harry Weaver Neuroscience Scholar Jonah Chan, PhD, invented a new micropillar technology to rapidly identify compounds that stimulate the regrowth of myelin. The team initiated a screen using this technology, testing a library of 1000 drugs already approved by the FDA for other conditions for their ability to promote the development of myelin-making cells and wrapping of myelin around the micropillars. Clemastine, an oral antihistamine used to treat allergy symptoms, was identified through this process. Dr. Chan was the first recipient of the Barancik Prize for Innovation in MS Research for this pioneering work.

The Clinical Trial: Ari Green, MD, led the team conducting the clinical trial. They administered oral clemastine or inactive placebo twice daily to 50 people with MS and optic nerve damage for 150 days. For the first three months of the study, people were given either clemastine or a placebo, and for the second two months, those initially given clemastine received the placebo and vice-versa. Tests were performed before and after treatment that measured visual evoked potentials. Visual evoked potentials measure transmission of electric signals along optic nerve pathways in response to stimulation. Delays in this transmission occur when the myelin is damaged and if these delays are reduced, it is an indication that myelin repair is occurring along the nerve pathways. (Participants had significant delays in transmission in at least one eye.)

Delays in visual evoked potential were reduced by 1.9 milliseconds per eye, a statistically significant result. The results hinted at a reduction in vision impairment as well, but it did not reach statistical significance. Fatigue increased mildly in participants taking clemastine.

Clemastine is an over-the-counter allergy medication. Doses in this trial exceeded the maximum recommended for over-the-counter use. Also, clemastine affects a range of targets in the body, and involves the risk for side effects, particularly at increased dosages.

Dr. Green cautions that more research with larger numbers of people is needed before doctors can recommend clemastine as a treatment for people with MS. This team is planning an additional trial to further determine the safety and effectiveness of clemastine, as well as studies to identify compounds that may enhance myelin repair and cause fewer side effects.

Drs. Green and Chan both received Society funding to launch their early careers as independent researchers focused on MS, including Harry Weaver Neuroscience Scholar Awards.

Comment: “This preliminary report is exciting, and we look forward to seeing the full results of this clinical trial of clemastine presented and then published,” says Bruce Bebo, PhD, Executive Vice President, Research at the National MS Society. “Finding a way to repair nervous system damage to restore function to people with MS is a very high research priority.”

The 2016 Annual Meeting of the American Academy of Neurology will take place in Vancouver, BC, Canada, April 15-21. The National MS Society will be providing reports summarizing studies. Anyone can get a preview of the technical summaries, or abstracts, of presentations to be given at the meeting at this link, free of charge. 

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10 Apr 2016

Study finds greater role for environment in MS

Environmental factors may be playing a much greater role in the onset of multiple sclerosis than previously realized, according to early research led by Queen Mary University of London and Barts Health NHS Trust. The theory is based on new findings showing that Black people and South Asians in east London have a higher prevalence of MS compared to those groups in their ancestral countries, indicating a strong environmental influence on the disease that could be driving higher MS rates in London.

The researchers, led by Dr. Klaus Schmierer, used electronic records from general practices in four east London boroughs (Tower Hamlets, Newham, Hackney and City of London) which were reviewed for the number of MS-diagnosed patients, grouped by ethnicity. What they found was that MS appeared to be several times more prevalent among African people and South Asians living in London compared to those groups living in their ancestral territory. While prevalence differences could be explained by fewer MS diagnoses occurring in less resourced countries, the authors said it is unlikely to explain the gulf in prevalence between these territories. They said that an alternative, or additional, explanation would be increased exposure in the UK to environmental agents or behaviors that facilitate the development of MS.

Lead author Schmierer said, “MS is a disease where genetic ancestry and environmental factors play a role, however to what degree these two aspects are driving the risk of developing MS remains unknown. We found that people of Asian and African extraction in London are far more likely to have MS than people of the same ethnicity living in their ancestral countries. Our early results suggest that environmental factors play a pivotal role in the risk of developing MS, while the individual genetic backdrop may be of lesser importance.”

The study was published in Multiple Sclerosis Journal.

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07 Feb 2016

MRI Study Yields Clues to the Development of Primary-Progressive MS

Summary

  • In a study of 453 people described as having radiologically isolated syndrome (specific areas of damage on MRI scans with no accompanying symptoms), about 12% eventually developed primary-progressive MS. This mirrors the frequency of primary-progressive MS seen in other studies of people with MS.
  • Those who developed primary-progressive MS were more likely to be men, were significantly older, and were more likely to have MS-like lesions in the spinal cord compared to those who went on to develop clinically isolated syndrome (CIS) or relapsing-remitting MS.
  • This study provides a rare glimpse of a very early stage of disease even before progression begins, and provides additional evidence of the value of research into radiologically isolated syndrome. Finding a way to identify and track primary-progressive MS earlier may help to improve access to care for those who have it.
  • The team (Dr. Orhun Kantarci, Mayo Clinic and Foundation, and national and international collaborators) published their findings in Annals of Neurology (published online, December 29, 2015).

Background: Diagnosing MS can be challenging, and it often happens in stages. The term “clinically isolated syndrome” (CIS) is used to describe a first episode of neurologic symptoms  that lasts at least 24 hours and is caused by inflammation and demyelination in one or more sites in the brain and spinal cord. Individuals who experience a CIS may or may not go on to develop definite MS. However, clinical trials of specific disease-modifying therapies have led to approvals for their use to treat CIS.

Some people have specific, “clinically silent” lesions (areas of inflamed or damaged tissue) on MRI, meaning that they are experiencing no symptoms and only have imaging findings. There has been growing research on this phenomenon, called “radiologically isolated syndrome (RIS),” which like CIS may or may not go on to develop into definite MS. There is debate as to whether people with RIS would benefit from early treatment with disease-modifying therapies.

Primary-progressive multiple sclerosis is a relatively rare form of MS, with about 10% of all people with MS receiving this diagnosis. It is characterized by steady worsening of neurologic functioning, without any distinct relapses (also called attacks or exacerbations) or periods of remission.

The Study:  This team examined data from 453 people with RIS collected from 22 investigators in five countries; a database of 210 people with MS in Olmsted County, Minnesota; and a cohort of 754 people with progressive MS.

Of the 453 people with RIS, 128 (28%) went on to develop a first neurological event consistent with CIS or relapsing MS. Of these, 15 (11.7%) developed primary-progressive MS. Those who developed primary-progressive MS were more commonly men, and older at diagnosis by approximately 10 years, than the 113 people who developed CIS/MS. The frequency of primary-progressive MS and age comparisons were similar to those identified in other groups of MS. Of the 15 who went on to develop primary-progressive MS, 12 had MRI scans of the spinal cord, and all 12 had lesions in the spinal cord, compared with 64% of those who developed CIS/MS.

The team (Dr. Orhun Kantarci, Mayo Clinic and Foundation, and national and international collaborators) published their findings in Annals of Neurology (published online, December 29, 2015).

Conclusions: This study provides a rare glimpse of a very early stage of disease even before progression begins, and provides additional evidence of the value of research into radiologically isolated syndrome. Finding a way to identify and track primary-progressive MS earlier may help to improve access to care for those who have it.

Read more about primary-progressive MS

– See more at: http://mjnickum-mynewbook.blogspot.com/#sthash.AQU8pdwj.dpuf

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20 Dec 2015

New Study Suggests People with MS are at Increased Risk for Depression, Anxiety and other Psychiatric Disorders

Summary
• A large-scale study from Canada suggests that people with MS have increased rates of anxiety, bipolar disorder, depression, and schizophrenia compared to people without MS.
• Among people with MS, women were more likely than men to develop depression, anxiety disorder, and bipolar disorder, while men were more likely than women to develop schizophrenia. Although women with MS were more likely to develop depression than men, men developed depression at a much higher rate compared to men without MS.
• This study provides new information about the risks of psychiatric disorders in people with MS. Recognizing and addressing issues related to mental and emotional health can greatly improve quality of life for individuals and families.
• The National MS Society is focusing a light on psychosocial issues and emotional health in MS as part of its commitment to drive research and programs in wellness.
• The team (Ruth Ann Marrie, MD, PhD) published their results in Neurology (2015;85:1–8).
Details
Background: In scientific terms, having two chronic medical conditions at once is called “comorbidity.” There is growing recognition that comorbidities may complicate the diagnosis of MS and also influence disease progression, as well as an individual’s wellness and quality of life. It has long been known that depression and bipolar disorder are more common among people with MS than in the general population. In a recent study from Dr. Marrie and others, psychiatric disorders (depression and anxiety) were among the five most prevalent disorders occurring alongside MS. The current study specifically looks at psychiatric comorbidities in people with MS.

The Study: The team identified 44,452 persons with MS and 220,849 controls without the disease in administrative medical data from four Canadian provinces. They examined medical records to determine the incidence (new cases) and prevalence (all existing cases) of depression, anxiety, bipolar disorder, and schizophrenia from 1995 to 2005 among these groups.

The results show that the incidence and prevalence of anxiety, bipolar disorder, depression, and schizophrenia were all higher in people with MS than in people without MS in the control population. Among people with MS, women were more likely than men to develop depression, anxiety disorder, and bipolar disorder, while men were more likely than women to develop schizophrenia. Although women with MS were more likely to develop depression than men, men developed depression at a much higher rate compared to men without MS.

Results were published in Neurology (2015;85:1–8).

Next Steps: This study adds to a growing body of evidence on conditions that occur alongside MS. The National MS Society is focusing increased attention on psychosocial conditions in MS as part of its commitment to drive research and programs in wellness. Read more

In the face of a chronic, often progressive illness like MS, people may tend to focus primarily on their physical health and neglect their emotional health — which is an essential component of overall health and wellness. Recognizing and addressing issues related to mental and emotional health can greatly improve quality of life for individuals and families. Read more about emotional health and MS

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07 Nov 2015

Mom’s Story, a Child Learns about MS is available in more formats

Mom’s Story can be found on the following sales channels:
Apple –
Kobo –
Oyster -.
Page Foundry -.
Scribd –
Tolino –

Also available on Kindle, Nook,

Available as .Mobi and .epub files from mjnickum@saguarobooks.com

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24 Mar 2015

Give-away

The Giveaway for Mom’s Story on Amazon has ended. Thanks for participating. Mom’s Story, a Child Learns about MS is available on Amazon in paper: http://www.amazon.com/Moms-Story-Child-Learns-About/dp/147835819X/ref=tmm_pap_title_0?ie=UTF8&qid=1427210007&sr=1-1

and as an ebook on Kindle: http://www.amazon.com/Moms-Story-Mary-Nickum-ebook/dp/B00C0BO9TA/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=1-1&qid=1427210007

Also Available:
http://www.barnesandnoble.com

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08 Mar 2015

Study: Genetic variant may be MS risk factor

In a new study, researchers testing DNA in siblings with MS discovered a genetic variant in women that may increase risk of developing multiple sclerosis. According to study authors, the variant may be the one of the strongest genetic risk factors for MS discovered to date.

Researchers at the University of Illinois at Chicago were able to test three sisters among a group of five siblings between the ages of 23 and 26, all diagnosed with MS. What they found was a genetic change known as a single nucleotide polymorphism, or SNP – a change in a single base-pair of the DNA – in a gene called STK11, which plays a role in tumor suppression and is believed to have several roles in brain function. They found the variant in all three they tested.

To determine if the SNP could be a contributing factor to the siblings’ multiple sclerosis, the researchers screened DNA samples from 1,400 people – 750 with MS and 650 without – provided by Jorge Oksenberg at the University of California, San Francisco, who is a leading expert on the genetics of MS. They found that the SNP was 1.7 times as prevalent in women with MS as in women without the disease, making it one of the highest known genetic risk factors for MS.

Based on their analysis, the researchers estimate that the STK11 SNP is present in about 7 percent of the general population. But because far fewer people develop MS, other genetic or nongenetic factors must play a role in the development of the disease, said senior author Doug Feinstein, professor of anesthesiology at UIC and research biologist at the Jesse Brown VA Medical Center.

The variant occurs almost twice as often among women with MS as in women without the disease, making it “one of the strongest genetic risk factors for MS discovered to date,” said Feinstein.

The findings were published in the journal ASN Neuro.

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28 Jan 2015

How Common Is It To Have MS With Other Medical Conditions? First Results from the MS “Comorbidities” Project

Unfair as it seems, MS doesn’t keep other disorders away. It’s possible to have MS and “something else” at the same time. A new international initiative is being launched to understand how common it is for people with MS to have other conditions and how these other conditions may impact the course and treatment of an individual’s MS. The first stage of this project is now published, in preparation for an international scientific workshop jointly supported by the National MS Society and the European Committee for Treatment and Research in MS (ECTRIMS) to focus attention on comorbidities and determining next steps to finding solutions for people with MS.
Background: In scientific terms, having two chronic medical conditions at once is called “comorbidity.” There is growing recognition that comorbidities may complicate the diagnosis of MS and also influence disease progression, as well as an individual’s wellness and quality of life. In addition MS some other disorders may have risk factors in common. For these reasons, the MS Comorbidities Project is seeking to characterize the types and frequencies of comorbidities in MS in advance of a scientific meeting to map out next steps for research strategies to address this gap area. This project is being undertaken by the International Advisory Committee on Clinical Trials in MS, a committee comprised of international leaders in MS research and clinical care that is jointly supported by the National MS Society and ECTRIMS.
The first phase of this project was a systematic review of existing published studies related to specific medical conditions in people who have MS. Ruth Ann Marrie, MD, PhD (University of Manitoba) and colleagues* in Denmark, Italy and the U.S., now report their findings in seven papers published in the MS Journal. (Read overview and companion papers; no subscription is needed.) The review was supported in part by the National MS Society (U.S.A.) and a Don Paty Career Development Award from the MS Society of Canada.
Review Results: The authors identified more than 7,000 studies on a variety of comorbidities and MS, and narrowed these down, completing a full-text review of 249 studies that were conducted between 1905 and 2012. Most were conducted in North America or Europe, leading the authors to comment that little is known about comorbidities that occur with MS in Central or South America, Asia, or Africa. In addition, the quality and design of the studies were so variable that it was difficult to compare results. Nevertheless, their extensive research yielded these highlights, among many others:
• The five most prevalent disorders occurring alongside MS were depression, anxiety, high blood pressure, high cholesterol, and chronic lung disease.
• The most prevalent autoimmune diseases occurring with MS were thyroid disease and psoriasis.
• The types of cancer that occurred most often in people with MS were cervical, breast, and digestive system cancers. There appeared to be a higher than expected risk of meningiomas and urinary system cancers, and a lower than expected risk of pancreatic, ovarian, prostate and testicular cancer, compared to the general population.
• Some disorders were found more often than expected by the investigators based on previous research, such as heart disease, congestive heart failure, stroke, arthritis, inflammatory bowel disease, irritable bowel syndrome, seizure disorders, bipolar disorder, sleep disorders, and alcohol abuse.
Comment: The authors suggest that further work is necessary to develop data sources that examine MS comorbidities worldwide, and that are specific to individuals of different ages, genders, and ethnicities. They also conclude that efforts should be coordinated so that methodologies are similar and results can be compared.
To this end, the Society and ECTRIMS are convening a workshop that will move this research forward. The International Advisory Committee on Clinical Trials in MS and other experts in MS research will meet in spring 2015 to discuss next research steps, such as available data that may facilitate further research and which comorbidities demand more immediate focus.

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18 Jan 2015

Writing Mom’s Story

I began writing the story in late 2007. Actually, I began the story in February 1978. Immediately after getting out of bed that February morning, I couldn’t stand. The room was whirling, my stomach was churning. I sat on the edge of t he bed until my head cleared a little and I could stand. I tried to dress, but wasn’t able to bend down without the room spinning again and the nausea returning. I made a doctor’s appointment. He couldn’t find anything and treated me with Dramamine for a mild middle ear inflammation. It cleared after about a week and I put the occurrence in the back of my mind. In August of the same year, I awoke one morning with a gray spot in the vision of my left eye. It enlarged over the morning. By afternoon, my vision in my left eye was limited to the extreme outer edges. Being Saturday, I went to the Emergency Room, convinced I was going blind. An Ophthalmologist happened to be on duty. He diagnosed the problem immediately as optic neuritis and prescribed prednisone. That cleared in about eight weeks.
Fast forward to 1989. I had been a “normal volunteer” at the National Institutes of Health for several years. I was asked if I would volunteer for an MRI. They said it’s easy if you’re not claustrophobic, no needles, only some noise. I said I would be glad to do it. They were right, lots of noise but no other discomforts. About a week later, a physician called to tell me that they found something strange on my brain. I went back to the physician and came away with a definite diagnosis of multiple sclerosis (MS). I launched a search for information, this being pre-internet, I went to libraries and contacted the National Multiple Sclerosis Society (www.nmss.org ).
By June of 2006 I had retired on disability from my position as a Science Librarian and worked from home as an editor and writer. I attended a meeting of the Outdoor Writers Association of America (www.owaa.org ). I was interested in writing for children by this time and I attended a session given by the renowned children’s author, Kathleen Kudlinski (www.kathleenkudlinski.com ). Her one piece of advice (among others) that I took away from her presentation was: “Write what you know.”
In October 2007, after spending over a year researching and learning about writing for children, I asked myself, “What do I know?” It came to me quickly, I know about MS. I have been interested in health issues and have read quite extensively, especially about plagues and infectious diseases. But also about MS, I have an extensive library about the disease and I have reviewed books on the subject for Library Journal.

Now in it’s second edition.

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