Mom's Story

A discussion about Mom's Story and MS…

Archive for the month “January, 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.

Advertisements

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.

Interim Results Reported from Clinical Trial of Stem Cell Transplantation in People with Relapsing-Remitting MS

A nationwide team of researchers report on interim results from a small, five-year study of transplantation of the individuals’ own hematopoietic (blood cell-producing) stem cells combined with high-dose immunotherapy in 24 people with relapsing-remitting MS. This procedure aims at “rebooting” the immune system to prevent MS immune attacks against the brain and spinal cord. At three years, 78.4% of participants experienced no new disease activity. When this trial has completed its five-year duration, it will be an important addition to research needed to determine whether this approach to stem cell transplantation is safe and effective in people with MS. Richard A. Nash, MD (Colorado Blood Center Institute) and colleagues report in JAMA Neurology (Published online December 29, 2014). This study was sponsored by the National Institute of Allergy and Infectious Diseases of the National Institutes of Health.
Background: One type of procedure that has been explored for many years in MS is called “autologous hematopoietic (blood cell-producing) stem cell transplantation” – or HSCT. This procedure has been used in attempts to “reboot” the immune system, which launches attacks on the brain and spinal cord in people with MS.
In HSCT, these stem cells (derived from a person’s own bone marrow or blood) are stored, and the rest of the individual’s immune cells are depleted usually by chemotherapy. Then the stored stem cells are reintroduced back to the individual’s bloodstream. The new stem cells migrate to the bone marrow and over time produce new cells. Eventually they repopulate the body with immune cells. The goal of this currently experimental procedure is that the new immune cells will no longer attack myelin or other brain tissue, providing the person, what is hoped to be, a completely new immune system.
The Study: Investigators enrolled 25 people who had experienced an MS relapse involving loss of neurologic function while taking disease-modifying therapies during the previous 18 months. Participants received HSCT along with high-dose immunosuppressive therapy (a regimen of treatments that profoundly suppress the immune system), and followed for five years. The primary endpoint of this study is whether participants experience “event-free survival,” meaning that they did not die or have an increase in disease activity. Disease activity is defined as any one of the following outcomes occurring: confirmed loss of neurologic function, clinical relapse, or new lesions observed on MRI scans. The current publication presents a planned analysis after three years of follow up.
Results: One individual experienced a pulmonary embolism induced by heparin (administered as part of stem cell collection), and withdrew from the study. Event-free survival at three years was 78.4%, down from 95.8% after one year. Treatment failed in five individuals. Scores on clinical scales measuring disease activity and quality of life, including the EDSS, improved significantly at three years after HSCT. Immune system analysis showed prolonged depletion of the immune cells that drive the immune attack, indicating that the immune system was indeed “rebooted.”
Two deaths occurred, one from complications due to MS progression and another due to asthma. One person experienced an MS attack, an individual who had not complied with a prednisone regimen designed to reduce this risk during collection of stem cells. There were 130 adverse events that were severe or life-threatening, mostly cytopenias (blood cell reductions) and infections.
Comment: Rigorous clinical trials of stem cell therapies are crucial to determining their safety and effectiveness in people with MS. “We look forward to seeing the completed results of this important study,” says Bruce Bebo, PhD, Executive Vice President of Research at the National MS Society. “There are significant risks involved in hematopoietic stem cell transplantation, and it’s important to ensure that this will be a safe solution for people with MS, with significant clinical benefit.”
With the urgent need for more effective treatments for MS, particularly for those with more progressive forms of the disease, the National MS Society believes that the potential of all types of cell therapies must be explored. The Society is currently supporting 15 research projects exploring various types of stem cells, including cells derived from bone marrow, fat and skin, and has supported 70 stem cell studies over the past 10 years.

Post Navigation