Monday, December 29, 2014

December 2014 Round-Up of MS News and Research


  • 3-Year results from HALT-MS trial shows clinical efficacy in RRMS
  • Almost half of MS patients experience tremors, according to patient reports
  • MS panel recommends expanding No Evidence of Disease Activity (NEDA) to include neuropsychological measures
  • Cinnamon holds potential as an economical and effective treatment for MS
  • Fecal microbiota transplantation (FMT) may improve MS symptoms
  • Other Studies of Interest

Read this post in its entirety:

Monday, December 22, 2014

Life with Chronic Illness is Unpredictable and Often Disorganized

When I first opened our bags after we arrived, everything was neatly folded and rolled up into perfect flat squares and uniform cylinders. It was easy to know exactly where everything was located as I was the one who packed our bags. But as soon as we began to pull out individual items to choose between the limited selection of clothing we brought, organization and uniformity dissolved.

Living with multiple sclerosis, or any other unpredictable chronic disease, can feel as though the neat pieces of life quickly become disorganized and disheveled. Symptoms can unexpectedly emerge and demand your attention. A relapse may threaten to derail your activities and send you looking for alternative solutions to situations which arise. Your neat life becomes a temporary mess.

On day four of our holiday adventure, the suitcase on the bedroom floor has become a mixture of folded organization and rifled through belongings. But for the most part, we can still find what we want although it may not be where we thought it had been. We haven’t yet reached the point where we’re asking each other, “Honey, have you seen [insert description of desired item]? I can’t find it. It was right here yesterday, I thought.”

Read this post in its entirety:
Living Out of A Suitcase


Wednesday, December 10, 2014

Multiple Sclerosis Without Evidence of Demyelination?

People who are in the process of being tested for multiple sclerosis often have many questions. Some of the most common questions surround the subjects of MRIs and lesions. Magnetic Resonance Imaging (MRI) is a powerful tool used to help diagnosis MS as well as measure disease progression. Lesions are the scars caused by demyelination which can be detected by MRI scan.

There have been many occasions where people in the process of being diagnosed with MS ask whether it is possible to have MS and not have brain lesions. The short answer is an unequivocal YES.

When I first experienced blinding optic neuritis in 2000, the neurologist ordered MRI scans of my brain. The results showed inflammation of the optic nerve, but no detectable lesions in the brain. Thus I was not diagnosed with MS at that time.

Five years later, when I was undergoing MRI testing of both my brain and cervical spine, lesions were seen in my neck. But my brain was still clear from lesions or atrophy. We only had to wait a few months until additional lesions showed up in my cervical spine and an official diagnosis was made.

Eventually the smaller lesions in my spine grew together to form one large lesion that spanned from the C4 to C6 vertebras. At the time I switched from my original disease-modifying therapy (Copaxone) to a totally different treatment approach (off-label Rituxan), I was hoping to avoid developing even larger lesions in my spine as I was definitely experiencing increased symptoms and relapses.

After I had been on Rituxan for a year, my MRI report indicated stability in lesion load, meaning that I had not developed any new or larger lesions. Follow-up scans two years later were stable, without evidence of new or worsening lesions, once again.

Another two years have past and I’ve just recently undergone MRI exam to determine two things: 1) How is my MS is doing? and 2) Is my current treatment continuing to be effective? What follows are the radiologist’s reports following the recent MRIs.

Read this post in its entirety:
Living with MS: No Evidence of Demyelination


Tuesday, December 9, 2014

Winter Survival Tips

Surviving winter is about more than keeping warm taking extra pain medication with you live with RA, it is about being proactive and keeping ahead of the dangers and/or negative effects of winter.

Gloves vs. mittens. 
Avoid gloves that are too tight as they can restrict blood circulation and aggrevate Raynaud’s syndrome. Consider wearing mittens instead. Mittens allow your fingers to warm each other and provide extra room in which you can insert disposable “hand warmers” to keep arthritis joints warm and toasty.

Exercise.
Too easily, people can become less active during the winter months; however, immobility works against RA. Muscles contribute to the strength and stability of joints and need regular activity to stay healthy. Stretching and gentle range of motion exercises are essential. Exercise can decrease RA pain by keeping joints and cartilage healthy, while also helping to reduce symptoms of depression which are common during the winter months.

Heated pools are good.

Clear snow and ice.
To prevent frost from forming on your car’s windows, spritz the outer surface of the window with a mixture of 3 parts vinegar and 1 part water once you are done with errands for the day. To make snow shoveling easier, spray your shovel with aerosol cooking spray beforehand to help the snow glide right off.

Stay safe.
Wet conditions of winter can be treacherous and we want to avoid falling to reduce the risk of injury. Wear sturdy, supportive shoes with good tread (sometimes tennis shoes are the worse shoes to wear on slippery surfaces) and try to avoid walking on ice. You may be better off walking through fresh snow, providing natural traction. Also, ask your doctor about obtaining a ‘handicapped’ parking permit to allow you to park closer to your destination and consider using a mobility aid such as a walking cane for the added stability.

Rest up and relax.

Hydrate and moisturize.
Drink plenty of water to keep your body hydrated from the inside out. Protect your skin by keeping it moisturized. As a musician, it is important that I keep my lips, part of my playing instrument, soft and supple by locking in moisture. I like to use plain vaseline or A+D® Original Ointment as Chapstick makes my lips feel dry.

Avoid getting sick.

Take medication as prescribed.

Have fun and watch for longer days to come.

Read this post in its entirety:
Surviving Winter with RA

Thursday, December 4, 2014

Carnival of MS Bloggers #163

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

by Bill Walker at MS and Beyond

When I think about myself as an individual in this lifetime experience, I always have to separate my reality, into two unique pieces which quite simply is a body and a soul. And strangely enough this is of great comfort to me when I start to think about my Multiple Sclerosis diagnosis. I understand that MS is a physical (body) ailment that has little to do with the soul part of my incarnation beyond being a lesson on learning compassion and love. I’m sure that sounds like something that should be significant to my spiritual growth overall, which it is, but I take great comfort in knowing that on the day I cease to exist in the physical plane is also the day that MS ceases to be a part of my continued existence, simply stated if I learn my lessons well enough, I can move beyond Multiple Sclerosis and never have deal with it again as far as I’m concerned.

Have you ever heard someone with MS or Parkinson’s or Cancer or any devastating disease say that it was the best thing that ever happened to them before? I can assure you that you didn’t hear it from me but I have come to understand what it is they are referring to when they make such a statement. After you can move yourself beyond the, why me phase, you start to see the world in a completely different manner. It’s like coming out of a deep all encompassing fog where you can see the world with eyes that no longer tune out a deeper compassion for the human experience, in short, you learn to love on a much more profound level then you ever thought you could. It makes almost everything that most people worry about in life seem incredibly insignificant from that point on. And if it took my getting Multiple Sclerosis to learn that, then I have to consider the possibility, that though I’m not really happy that’s what it took, perhaps it was worth the experience to achieve that overwhelming spiritual growth that is occurring within me.

And then it all starts to hit you just how petty most of what our race seems to think is important in this world. It’s not about amassing great wealth, or having the biggest house, or the power to influence other peoples lives just because you can. It’s ultimately about compassion, truth, and the willingness to help everyone else around you to find peace in their own existence.

And most of all, it’s about finding your own personal faith in who and what you are, and sharing that with everyone else!

I’m dedicating this blog entry to a person that I didn’t know all that well, but I wish I had. When I met her she was in the advance stages of Progressive MS and little did I know at the time that this would be almost prophetic since it was twenty years before my own MS diagnosis. She was one of the kindest and gentlest spirits that I have ever met never once complaining about the hardships of her own life which were extensive by any normal standards that most of us experience. However, she left behind her spiritual compassion that will be shared and passed on by each of her four sons, John, Steve, Bill, and Dave. She brought the light of God into this world and it is only right that this light be shared by all!


Camille Marie Kelly
Born: 11/27/1932
Passed: 1/10/1995


This concludes the 163rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 1, 2015. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 30, 2014.

Wednesday, November 26, 2014

November 2014 Round-Up of MS News and Research


  • Details of PML Death to be Added to Tecfidera Prescription Label
  • FDA Reverses Previous Rejection and Approves MS Drug Lemtrada
  • New Italian Study: Azathioprine is Not Inferior to Beta Interferon in Treating RRMS
  • Other Studies of Interest

Read this post in its entirety:
Hot Topics and MS Research News for November 2014

Sunday, November 23, 2014

Carnival of MS Bloggers #162

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.


by Meagan at Multiple Sclerosis, Motherhood, and other Traumatic Experiences

Do you ever have days when you feel like it has all become too overwhelming?

My grandparents, both in uniform during WWII
My grandparents were a living example of heroism and true love despite devastating life circumstances. Have you seen those movies with an unbelievable love story, overcoming all odds?

This is a true story.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them.

My grandmother with Bob Hope at the USO, 1940s, Hollywood, CA
Their story began on a Southern California beach in the 1940s, just after World War II began. It was love at first sight, according to my grandparents. My grandfather describes my grandmother as "the most beautiful girl he had ever seen." From that moment on, they hung onto each other through it all, never giving up on this commitment. They both joined the military during the war, my grandmother serving as a WAC, my grandfather in the Army.

Soon after, they married and started a large family, with 3 girls and 4 boys. My mother was the oldest girl, and took on a great deal of responsibility for her younger siblings.

This beautiful love story began to take a turn.

My grandparents on their wedding day, 1945
That beautiful image, that perfect wedding day....the meeting on the beach, the love that brought these two together. This is the foundation of a relationship that would truly stand the test of time, and the test of multiple sclerosis.

Sometimes, difficulties bring out the best in people. Sometimes it takes struggle to find out who we really are, and what we are truly capable of. My grandparents were about to experience that struggle first hand.

My grandmother began to experience new neurological symptoms, new emotional instability, and eventually full blown seizures. The health history of my grandmother is somewhat unclear, because this was occurring in the 1950s, before MRI, before a solid understanding of multiple sclerosis. After years of symptoms and hospitalizations, my grandmother was eventually diagnosed with MS. At this time, the disease was poorly understood, and no treatments whatsoever were available.

My grandmother, mother, and aunt/uncles: 1960s
Looking back, I believe that my grandmother may have had a very progressive form of MS, and combined with almost daily seizures, this led to a rapid decline. A wheelchair made it's appearance when my grandmother was in her 40s, and eventually she needed nursing care and was bedridden. When faced with the option to move my grandmother to a nursing home, my grandfather refused.

Here is the beautiful part of the story.

My grandmother with her caregiver
My grandfather decorated a beautiful, sunny bedroom for his wife. He hired a caregiver who was a wonderful part of the family, present every day to care for the seven children and my grandmother while he worked. He must have been physically and mentally exhausted. He worked full time, served as husband, father of seven, caregiver, and breadwinner.

The family continued to grow, with myself and many other grandchildren making an appearance. Family Christmases, weddings, and other celebrations always included my grandmother. The love between my grandparents could be felt strongly if you were near them, and for many years, the love grew and the care continued. Eventually, however, my grandmother lost her battle with MS.

My grandfather lived on for another 15 years, gardening, visiting with many grandchildren, and enjoying holidays with the family. He would always say that he was going to see his wife again someday. He was waiting for that day.

My grandparents...1980s
The strength of the human spirit is incredible, isn't it? The ability of a human being to sustain the daily grind, work, children, marriage, illness, and even death. The depth of our strength cannot truly be known until we face challenges like MS. We must undergo many changes in life, adapt, overcome, and go on. 

On their grave is the quote "Suffering Disappears, Love Remains."

When you think about it, isn't that the truth? Our suffering isn't permanent. It isn't forever. But do you know what is? Love.

My grandmother with Louis Armstrong, 1950s
With my own diagnosis, I have seen my grandparent's story as a source of inspiration. I have a large family of my own, with six children depending on my husband and myself. I look at my grandparent's story and realize that anything is possible. There is no "I can't." I can and I will. 

When you feel that life has handed you a lousy deal, keep in mind: You are strong and capable. Your strength comes from a place deep within, and you won't believe how strong you can be when you have to. Lean on those around you when you need to.

MS certainly presents a great challenge to each of us, but I am so grateful for the many new treatments available, and the ongoing research. We live in a time of hope and promise, as far as MS goes. We are fortunate.

Despite everything we endure in life, it is still "A Wonderful World," isn't it?

by Lisa Emrich at Brass and Ivory




This concludes the 162nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.

Comments for this post.


Saturday, November 22, 2014

Please Join Me at iConquerMS™

The news is out!! The Accelerated Cure Project for MS (ACP), a nonprofit organization based in Boston that was started in 2001 by a person living with MS, has launched an exciting new patient-centered research initiative called iConquerMS™.

iConquerMS™is a Multiple Sclerosis Patient-Powered Research Network (MS-PPRN) established with a grant from the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010. PCORI’s mission is to fund research that will provide patients, caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

What is iConquerMS™?

The iConquerMS™ initiative is a novel way for you and me and all of us living with MS to work together to fight multiple sclerosis. It provides one centralized location where people with MS are empowered and enabled to securely contribute their health data, connect with others, and submit ideas to advance research.

Each of us is the expert on how MS affects our body and our lives. We have the information and data which researchers need to look for patterns. Each piece of data when combined with hundreds of thousands of other pieces of data becomes what is known as ‘Big Data’ and iConquerMS™ aims to amass the largest single source of combined data regarding MS in the world to date.

How is iConquerMS™ different?

At the heart of iConquerMS™ are people living with this disease, from those with the initial concept, to members of the Governing Board and Committees, to the participants who will contribute their ideas, experience, and data. iConquerMS™ is unique in that it is endorsed and supported by all major MS organizations in the United States, including NMSS, MSF, MSAA, and CanDoMS. Leaders from each organization have joined MS patients, researchers, and experts in the field to serve on iConquerMS™ Committees and Governing Board.

As an MS patient advocate, I am proud to serve as Chair of the Communications Committee for iConquerMS™. When you check out the website at iconquerms.org, you may recognize many familiar names and faces of fellow MSers also serving as committee members and staunch supporters of the initiative.

How can you contribute to iConquerMS™?

Register at iconquerms.org. You will find informed consent information that tells you the details on how your data will be used and how it will be de-identified so your individual identity is not attached to the records.

Enter your demographic data and complete surveys about life with MS. Currently there are four surveys available which took me about 20 minutes to complete after I registered. You may have completed similar surveys for your doctor or other research initiatives. Don’t worry about time, you can always take a break when you need to and come back to complete surveys later.

Share your electronic health records (EHRs), which can be as small as a single laboratory report or as complex as a complete medical history. No bit of data is too small or insignificant and you choose what to share. Detailed instructions are available, but you can always contact someone at iConquerMS™ for help if you have any questions or get stuck.

Submit your questions of what you think researchers should take a closer look at. (This is probably my favorite part.) The research committee, composed of people with MS and key scientists, will sort through our questions, formulate formal research queries, and design the tools to answer those questions.

Share your experiences with iConquerMS™ with everyone you know! We are aiming for more than 20,000 registered participants by next summer. It’s a huge number, I know, but only a fraction of the number of MS patients in the US. We need your help to spread the word and recruit others like yourself who want to help conquer MS.

Connect with others. Later in December, iConquerMS™ will launch a forum for MS patients to discuss any number of topics related to multiple sclerosis and research. You will also receive periodic updates from iConquerMS™ via email (you can always opt out of these) on data gathering and research interests.

Please Join Me Now at iConquerMS.org and Register Today!




Read this post in its entirety:
The Accelerated Cure Project Launches iConquerMS™, A Patient-Centered Research Initiative

Tuesday, November 18, 2014

Better Living with MS: Manage the Clutter


Recently I read an article in the International Journal of MS Care that hit home, “Clutter Management for Individuals with Multiple Sclerosis” by Jennifer Tamar Kalina from the MS Care Center of the New York University Langone Medical Center, New York. In the article, Ms. Kalina discusses the clutter management group program which has been offered at their MS Center for over 8 years. She describes in detail how incorporating clutter management interventions into MS care programs can enhance the quality of life and functional independence of people living with the disease.

Clutter has a profound impact on individuals living with chronic diseases such as MS, with detrimental effects on physical, financial, social, emotional, and cognitive functioning. Many common MS symptoms, such as decreased mobility, visual or cognitive impairment, fatigue, and depression, may contribute to clutter accumulation as well. Clutter removal interventions may increase patients’ participation in vocational and leisure activities, social pursuits, and other meaningful occupations.

Read this post in its entirety:
Clutter Management for MS Patients

Friday, November 14, 2014

Lemtrada (alemtuzumab) Approved by the FDA for Relapsing-Remitting MS in the US

The FDA approves Lemtrada for the treatment of relapsing-remitting MS. Read the press release below. The drug will be priced at $158,000 for two courses of treatment over two years, reports The Boston Globe. Lemtrada is administered by infusion over 5 consecutive days followed by infusions given over 3 consecutive days 12 months later. The Boston Globe continues, "Rebif, a competing drug compared with Lemtrada in clinical studies, costs $134,600 for a similar treatment regimen, or 17 percent less. But the Genzyme executives pointed out that patients on Lemtrada suffered 50 percent fewer relapses than those taking the other drug."

Genzyme’s Lemtrada Approved by the FDA
November 14, 2014
- Approval Establishes Genzyme’s MS Franchise in the U.S. with Two Approved Products; Follows Global Approvals -

Genzyme, a Sanofi company, announced today that the U.S. Food and Drug Administration (FDA) has approved LemtradaTM (alemtuzumab) for the treatment of patients with relapsing forms of multiple sclerosis (MS). Because of its safety profile, the use of Lemtrada should generally be reserved for patients who have had an inadequate response to two or more drugs indicated for the treatment of MS.

“Today’s approval is the culmination of more than a decade of work by Genzyme to develop Lemtrada,” said Genzyme President and CEO, David Meeker. “Lemtrada demonstrated superior efficacy over Rebif on annualized relapse rates in the two studies which were the basis for approval. A comprehensive risk evaluation and mitigation strategy (REMS) will be instituted in order to help detect and manage the serious risks identified with treatment.”

The FDA approval of Lemtrada is based on two pivotal randomized Phase III open-label rater-blinded studies comparing treatment with Lemtrada to Rebif®(high-dose subcutaneous interferon beta-1a) in patients with relapsing remitting MS who were either new to treatment (CARE-MS I) or who had relapsed while on prior therapy (CARE-MS II).

In CARE-MS I, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rates; the difference observed in slowing disability progression did not reach statistical significance. In CARE-MS II, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rates, and accumulation of disability was significantly slowed in patients given Lemtrada vs. interferon beta-1a. The clinical development program for Lemtrada involved nearly 1,500 patients with more than 6,400 patient-years of safety follow-up.

“The unmet need in MS remains high,” said Edward Fox, M.D., Ph.D., Director of the Multiple Sclerosis Clinic of Central Texas. “It is a great day for people living with relapsing forms of MS in the United States, who will now have access to this new meaningful treatment”.

The Lemtrada label includes a boxed warning noting a risk of serious, sometimes fatal autoimmune conditions, serious and life-threatening infusion reactions and also noting Lemtrada may cause an increased risk of malignancies including thyroid cancer, melanoma and lymphoproliferative disorders.

Lemtrada is only available through a restricted distribution program, the Lemtrada REMS (Risk Evaluation and Mitigation Strategy). This program has been developed to ensure that access to Lemtrada in the U.S. is only through certified prescribers, healthcare facilities and specialty pharmacies and to also ensure that patients are enrolled in the REMS program. The program is intended to help educate healthcare providers and patients on the serious risks associated with Lemtrada and the appropriate periodic monitoring required to support the detection of these risks for 48 months after the last infusion. The REMS is based on a developmental risk management program that was successfully implemented in the Phase 2 and Phase 3 trials and allowed for early detection and management of some of the serious risks associated with Lemtrada.

“The FDA approval of Lemtrada is a significant milestone for people living with relapsing MS in the United States,” said Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer at the National MS Society. “We are pleased that the voices of the MS community have been recognized and that people with relapsing MS will now have access to a new, needed treatment option.”

Lemtrada has a unique dosing and administration schedule of two annual treatment courses. The first treatment course is administered via intravenous infusion on five consecutive days, and the second course is administered on three consecutive days, 12 months later.

The most common side effects of Lemtrada are rash, headache, pyrexia, nasopharyngitis, nausea, urinary tract infection, fatigue, insomnia, upper respiratory tract infection, herpes viral infection, urticaria, pruritus, thyroid gland disorders, fungal infection, arthralgia, pain in extremity, back pain, diarrhea, sinusitis, oropharyngeal pain, paresthesia, dizziness, abdominal pain, flushing, and vomiting. Other serious side effects associated with Lemtrada include autoimmune thyroid disease, autoimmune cytopenias, infections and pneumonitis.

First approved in September 2013 in the European Union, Lemtrada is approved in more than 40 countries. Additional marketing applications for Lemtrada are under review by regulatory agencies around the world.

The FDA approval of Lemtrada marks Genzyme’s second MS treatment approval in the United States. Genzyme received FDA approval of its once-daily, oral Aubagio® (teriflunomide) for the treatment of relapsing forms of MS in September 2012. Aubagio is approved in more than 50 countries, and is under review by additional regulatory agencies. Between clinical trials and commercial use, approximately 30,000 patients have been treated with Aubagio.

Multiple sclerosis is estimated to affect more than 2.3 million people globally. There are approximately 400,000 people living with MS in the United States.

Important Safety Information About Lemtrada for U.S. Patients

Serious and life-threatening autoimmune conditions such as immune thrombocytopenia (ITP) and anti-glomerular basement membrane disease can occur in patients receiving Lemtrada. Monitor complete blood counts with differential, serum creatinine levels, and urinalysis with urine cell counts at periodic intervals in patients who receive Lemtrada. Lemtrada is associated with serious and life-threatening infusion reactions. Lemtrada can only be administered in certified healthcare settings that have on-site access to equipment and personnel trained to manage anaphylaxis and serious infusion reactions. Lemtrada may be associated with an increased risk of malignancy, including thyroid cancer, melanoma and lymphoproliferative disorders. The Lemtrada REMS Program, a comprehensive risk management program with frequent monitoring, is being implemented to help mitigate these serious risks.

The Lemtrada label includes a boxed warning noting a risk of serious, sometimes fatal autoimmune conditions, serious and life-threatening infusion reactions and also noting Lemtrada may cause an increased risk of malignancies including thyroid cancer, melanoma and lymphoproliferative disorders. Lemtrada is contraindicated in patients with Human Immunodeficiency Virus (HIV) infection.

U.S. Indication and Usage

Lemtrada is indicated for the treatment of patients with relapsing forms of multiple sclerosis (MS). Because of its safety profile, the use of Lemtrada should generally be reserved for patients who have had an inadequate response to two or more drugs indicated for the treatment of MS.

Please click here for full U.S. Prescribing Information for Lemtrada, including boxed warning and contraindications.

As part of its continued commitment to MS patients, Genzyme’s MS One to One® program will provide information about multiple sclerosis, Lemtrada and other relevant resources. MS One to One is available and staffed by dedicated MS nurses and highly trained representatives who can provide support for individuals living with MS, their health care providers, family and loved ones. For more information about these support services, call the MS One to One line at 1-855-MSOne2One (1-855-676-6326Monday through Friday, from 8:30am – 8:00pm ET. Information and support are also available atwww.MSOnetoOne.com.

About Lemtrada™ (alemtuzumab)

Alemtuzumab is a monoclonal antibody that targets CD52, a protein abundant on T and B cells. Circulating T and B cells are thought to be responsible for the damaging inflammatory process in MS. Alemtuzumab depletes circulating T and B lymphocytes after each treatment course. Lymphocyte counts then increase over time with a reconstitution of the lymphocyte population that varies for the different lymphocyte subtypes.

In CARE-MS I, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rate (0.18 for Lemtrada and 0.39 for interferon beta-1a (p<0 -6.5="" .0001="" 1-a="" 11="" 30="" 55="" 59="" 78="" a="" and="" at="" baseline="" beta-1a="" beta="" change="" did="" difference="" disability="" for="" from="" in="" interferon="" lemtrada="" lesion="" not="" observed="" of="" p="0.31).<u" patients="" percent.="" percent="" progression="" proportion="" reach="" reduction.="" reduction="" relapse-free="" relative="" remaining="" risk="" significance="" statistical="" t2="" the="" two="" volume="" vs.="" was="" with="" year="">


In CARE-MS II, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rates (0.26 for Lemtrada and 0.52 for interferon beta 1-a, p<0 -1.2="" .0001="" 1-a="" 21="" 42="" 47="" 49="" 65="" a="" and="" at="" baseline="" beta-1a="" beta="" change="" confirmed="" did="" disability="" for="" from="" in="" interferon="" lemtrada="" lesion="" lower="" not="" of="" p="0.14).<u" patients="" percent="" progression="" proportion="" reach="" reduction.="" reduction="" relapse-free="" relative="" remaining="" risk="" significance="" significantly="" six-month="" statistical="" t2="" the="" two="" volume="" vs.="" was="" with="" year="">


Genzyme holds the worldwide rights to alemtuzumab and has responsibility for its development and commercialization in multiple sclerosis. Bayer Healthcare receives contingent payments based on global sales revenue.

About Aubagio® (teriflunomide)

Aubagio is an immunomodulator with anti-inflammatory properties. Although the exact mechanism of action for Aubagio is not fully understood, it may involve a reduction in the number of activated lymphocytes in the central nervous system (CNS). Aubagio is supported by one of the largest clinical programs of any MS therapy, with more than 5,000 trial participants in 36 countries. Some patients in extension trials have been treated for up to 10 years.

U.S. Indication and Usage

Aubagio (teriflunomide) is a once-daily, oral therapy indicated for the treatment of adult patients with relapsing forms of multiple sclerosis. The recommended dose of Aubagio is 7 mg or 14 mg orally once-daily.

Important Safety Information About Aubagio for U.S. Patients

The Aubagio label includes the risk of hepatotoxicity and, teratogenicity (based on animal data). In the United States, this information can be found in the boxed warning.

In MS clinical studies with Aubagio, the incidence of serious adverse events were similar among Aubagio and placebo-treated patients. Serious events may include decreased white blood cell count, peripheral neuropathy, hyperkalemia, skin reactions and increased blood pressure. The most common adverse events associated with Aubagio in MS patients included increased ALT levels, alopecia, diarrhea, influenza, nausea and paresthesia.

Teriflunomide is the principal active metabolite of leflunomide, which is indicated in the U.S. for the treatment of rheumatoid arthritis. Severe liver injury including fatal liver failure has been reported in patients treated with leflunomide. ALT should be monitored monthly for at least 6 months in patients who start treatment with Aubagio.

Aubagio is contraindicated in patients with severe hepatic impairment, pregnant women and women of childbearing potential who are not using reliable contraception and in patients who are taking leflunomide. Aubagio is not recommended for breast-feeding women, patients with immunodeficiency states, patients with significantly impaired bone marrow function or significant anemia, leucopenia, neutropenia or thrombocytopenia, patients with severe active infection until resolution, patients with severe renal impairment undergoing dialysis and patients with hypoproteinaemia.

Please click here for full U.S. Prescribing Information for Aubagio, including boxed warning and contraindications.

About Genzyme, a Sanofi Company

Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years. We accomplish our goals through world-class research and with the compassion and commitment of our employees. With a focus on rare diseases and multiple sclerosis, we are dedicated to making a positive impact on the lives of the patients and families we serve. That goal guides and inspires us every day. Genzyme’s portfolio of transformative therapies, which are marketed in countries around the world, represents groundbreaking and life-saving advances in medicine. As a Sanofi company, Genzyme benefits from the reach and resources of one of the world’s largest pharmaceutical companies, with a shared commitment to improving the lives of patients. Learn more atwww.genzyme.com.

About Sanofi

Sanofi, a global healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients’ needs. Sanofi has core strengths in the field of healthcare with seven growth platforms: diabetes solutions, human vaccines, innovative drugs, consumer healthcare, emerging markets, animal health and the new Genzyme. Sanofi is listed in Paris (EURONEXT: SAN) and in New York (NYSE: SNY).

Genzyme®, Aubagio® and MS One to One® are registered trademarks, and LemtradaTM is a trademark of Genzyme Corporation. Rebif® is a registered trademark of EMD Serono, Inc. All rights reserved.

[Press Release]

Tuesday, November 11, 2014

Military Service, Multiple Sclerosis, and Veterans Benefits

Did you know that multiple sclerosis (MS) has been associated with military service? 

The Department of Veterans Affairs (VA) recognizes that multiple sclerosis may be classified as a service-connected disability eligible for VA benefits. Includes in the resources section at the end of this article (posted on HealthCentral) are several studies published during the past decade examining aspects of MS diagnosis, symptoms, and treatment in US Veterans.


Established in 2003, the VA MS Centers of Excellence (MSCoeE) is dedicated to furthering the understanding of multiple sclerosis, its impact on Veterans, and effective treatments to help manage MS symptoms. The MSCoE utilizes a network of regional programs, telemedicine, and informatics to improve care for veterans with MS, to enhance MS educations for patients, caregivers and healthcare providers, and to promote research into the causes and treatments of MS.

The VA has provided an easy-to-use clickable map to help you locate the VA MS Specialty Clinic nearest you. The MSCoE also offers monthly MS Caregiver conference calls during which you may network, share experiences, discuss topics related to caregiving, and learn about available resources. Families and caregivers of people with MS are invited to participate on the 4th Monday of every month at 2-3 pm ET by calling 1-800-767-1750, then punch in 43157#. 

I am a Veteran with MS. Am I eligible for disability benefits?

If an individual had symptoms of MS while in the military, or within seven years after honorable discharge, he/she may be eligible for service-connected disability. In this case, the Veteran should complete the Veterans Application for Compensation and/or Pension available online or at their local medical center. 

If an individual separated from the military more than seven years prior to an MS diagnosis, he/she may still be eligible for disability benefits. In this case, the Veteran must be diagnosed by a healthcare provider, preferably a neurologist who specializes in MS, who directly links symptoms experienced during the first seven years post-separation to the current diagnosis.

To find out if you are eligible for benefits, read the VA eligibility criteria, or call the VA benefits line at 1-800-827-1000. You may also contact Veterans Service Organizations (VSO), such as the Paralyzed Veterans of America, Disabled American Veterans, Veterans of Foreign Wars, and United Spinal Association, for support and assistance.

Keep in mind that the VA continues to provide healthcare services to veterans with MS from the time of diagnosis and throughout their life, regardless of whether their MS has been determined to be service-connected or not.

Read this post in its entirety:
Multiple Sclerosis and the Military - In Honor of Veteran's Day

Saturday, November 8, 2014

When is It Time to Change RA Treatments?

Common considerations for altering treatmentAs near remission or low disease activity are common goals of RA treatment plans, signs of disease activity would indicate that your plan may need adjustment. However, minor flare-up of symptoms, such as sudden and temporary increases in painful, swollen, tender or red joints, may indicate the need for corticosteroids to reduce and control inflammation or an increase in the dosage of your current medication. If you have many flare-ups, consider talking to your doctor about adding or changing to a more effective DMARD or biologic.

The early symptoms of RA are also signs that your disease has become more active or that treatment is no longer working. Symptoms such as pain, fatigue, swollen or tender joints, and morning stiffness that lasts longer than 45 minutes, warrant a discussion with your rheumatologist. The return of symptoms may be subtle and not reach the same intensity you experienced before diagnosis, so you may not think to bring this up to your doctor, but you should.

New symptoms often indicate increased disease activity. Definitely tell your doctor when you’ve noticed that RA symptoms seem to have spread to other parts of your body or are behaving differently than they have in the past. If RA previously only affected your hands and now you notice new problems with your shoulders or knees, or you experience painful breathing or heart arrhythmias, or anything else unusual, call your doctor without delay.

Other signs of disease activity, such as laboratory results that indicate high levels of inflammation (such as increased SED rate or C-reactive protein levels) or x-rays showing additional joint damage, may also indicate that your current treatment plan is no longer effective. Your doctor should periodically measure you for signs of disease activity and document them in your medical record for future reference.

Increased risk of infection is a potential side-effect of a number of RA medications. If you are experiencing more infections or changes in white blood cell counts, your doctor may suggest a change in medication. Complications of infection can quickly become rather serious. In addition, there are some drugs, such as methotrexate, which your doctor may want you to skip while you use antibiotics and until an infection has cleared up.

A number of RA medications can have an impact on liver or kidney functions. If your laboratory results indicate increased liver enzymes or other abnormal results, your doctor may want you to change therapies.

RA is a disease that attacks primarily during child-bearing years for many patients. If you are pregnant or planning to become pregnant, you need to talk to your doctor about what you should do to protect an unborn fetus against birth defects or miscarriage. If you plan to breastfeed, your doctor may suggest an altered treatment plan to keep your RA under control while you are breastfeeding and until you are able to return to your previous therapy.

Effectively talk to your doctor When you visit your doctor, be sure to describe any symptoms you are experiencing or have experienced since your last visit. Make special note of any new symptoms or difficulties. Be sure to mention how RA is effecting your ability to engage in everyday activities, such as bathing or dressing yourself, turning knobs, holding a cup, getting up out of a chair or the car, or walking for a short distance. If RA is keeping you from doing the things you want to do, don’t be afraid to discuss options with your rheumatologist.


Read this post in its entirety:
Signs You May Need to Change RA Treatments

Thursday, November 6, 2014

Carnival of MS Bloggers #161

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Creating a World of My Own
by Melissa L. Cook of MSsymptoms.me

Papers stacked high, email flags a mile long, a budget to reconstruct on my desk, a teacher in for an evaluation, and it was already 2:30 pm - I would be home late again tonight. Double-timing as I navigated the halls of the school touching base with each of the teachers to see if they needed anything - support, supplies, a travel request. On to instruct an after school teacher inservice and then I would hightail it to a conference call on a new state report. I loved my job. My career as a school district administrator was, simply put, awesome. Little did I know my driven world would abruptly skid to a crawl, robbing me of my oomph and leaving me alone with no more tasks to complete than to peel myself out of bed, slip on clothes and cook dinner - tasks proving difficult at best on some days. Multiple sclerosis had taken an ugly turn for me for a period in my life.

Initially I was too ill to be aware of my devastating launch into isolation. Loneliness was a few months off. Fearing the worst was about to befall me, I planned my final arrangements and put my affairs in order. Then I waited. Nothing. Waited some more. The shock of being alone hit me like a ton of bricks. Overload at the office made it difficult to sustain meaningful relationships in the after-hours clearly evident at this point in my life. I was alone now during the day; my life would never be the same.

A few years later, I would write a blog post called, “Disability is Not a Bundle of Sick Days” with the conclusion, “It is as if I have spent the past 31 months out on sick days. Disability isn’t a sick day, it is life. It is about time I realized it and start living again.” I hid in my home for two and a half years. I was sick. I worried the people of my small town would question why I wasn’t working if I could mosey into the post office or store. Then one day I ventured out with a camera in hand to photograph the fall colors and was welcomed with open arms by my neighbors and friends whom had wondered what happened to me.

Johannes Vermeer, A Lady Writing
Creating a world of my own came from the freedom gained in throwing out the “sick day” mentality. Multiple sclerosis is a day-by-day illness meaning there are times I feel normal and can do things I used to. The first order of business was making new friends. Second, purpose was reintroduced into my life when I began blogging about my MS story and the latest research on www.MSsymptoms.me. Third, my desire to help others led me to become a first responder. People with disabilities can be assets to the EMS. Then, I became a board member for the local domestic violence and rape crisis center, putting my administrative training and education to use. Now I am polishing up a children’s story I have had on my mind for years and have a collection of short stories on living in Alaska’s bush country to revise.

Multiple sclerosis still hangs around my doorstep making an appearance periodically. However, I balance my new world in a way I never could with the demands of being employed. Resting as I need and remembering “all things in moderation” allows me to live an awe-inspiring life without the career I once loved.

The old saying, “When one door closes, another one opens” has been so true for me. My career goal of becoming a superintendent of schools with a Ph.D. was not realized. However, my dream of writing is taking shape. In addition, I find time to play with my grandchildren, quilt, bead, take photographs, and I want to learn how to paint with watercolors. Creating my own world becomes more exciting by the month. Yes, I still spend most of my days alone but I am not lonely; I am happy again. And, at the end of the day my best friend comes home to spend the evenings and weekends with me. I love you, Elgin! Thank-you for keeping me going.


This concludes the 161st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.

Tuesday, October 28, 2014

October 2014 Round-Up of MS News and Research

  • Psychiatric disorders may precede MS diagnosis
  • Non-drug therapies are more effective in combating MS-related fatigue
  • Reasons why people with MS fall more frequently
  • Other studies of interest   
 Read this post in its entirety:
Hot Topics and MS Research News for October 2014

Sunday, October 26, 2014

Early Signs of RA

Fatigue. One of the most common symptoms of several autoimmune diseases is fatigue; RA is no exception. You may experience fatigue before any other symptoms become obvious. In a 2013 survey of more than 1,000 RA patients in the U.S. (conducted by HealthUnion), fatigue was exceeded only by hand/wrist pain as one of the most significant initial symptoms of RA in 56.3 percent and 69.6 percent of survey respondents, respectively.

Morning stiffness. People with RA often experience early morning stiffness that lasts for hours. Stiffness may also occur throughout the day following periods of stillness or inactivity. Osteoarthritis may also cause morning stiffness; however, it will usually last 30 minutes or less.

Joint swelling and tenderness. Mild inflammation which accompanies stiffness may cause joints to appear larger than normal. The inflammation and swelling may also make joints feel warm to the touch and appear red. However, joint swelling may be so subtle as to make it difficult to identify, especially in obese patients.

Joint pain. The pain of early RA frequently involves specific joints of the hands or feet, including the metacarpophalangeal joint (MCP) at the base of each finger, the proximal interphalangeal joint (PIP), or the metatarsophalangeal joint (MTP) at the base of each toe. Keep in mind, however, that early RA pain is not limited to the hands and feet; larger joints may be involved.

Decreased range of motion, numbness, or reduced grip strength. Inflammation can affect tendons and ligaments as well as synovium, restricting range of motion, fluidity of motion, or physical function. Inflamed tendons may put pressure on nerves leading to numbness or weakness. In the 2013 survey mentioned above, 39.9 percent of respondents included reduced grip strength as an early symptom of RA, while 32.7 percent noted general weakness.

Low-grade fever. Often accompanied by general malaise, and in the presence of other symptoms, a low-grade fever may be an early warning sign of RA or a flare-up. However, a temperature above 100°F (38°C) is more likely to signal some other illness or, possibly, an infection.

Abnormal laboratory results. Studies show that anti-cyclic citrullinated peptide (anti-CCP) antibodies may be detected in healthy individuals years before the clinical onset of RA. Most, but not all, people with RA test positive for rheumatoid factor (RF). Nonspecific inflammatory markers, such as erythrocyte sedimentation rate (ESR or sed rate) or C-reactive protein (CRP), are often elevated, but test within normal ranges in about 60 percent of patients with early RA. Additional abnormal blood tests may include high platelet count, low albumin, raised alkaline phosphatase (a liver enzyme), or normocytic-normochromic anemia.

Firm lumps of tissue located under the skin. Rheumatoid nodules tend to grow close to joints affected by RA, such as elbows or wrists. They may be as small as a pea or grow to the size of a walnut. Nodules can also form on vocal cords, or appear in the lungs, heart or other organs.

Extra-articular symptoms. Patients with early RA may develop vasculitis, inflammation of the blood vessels, or serositis, which involves inflammation of the tissue lining the lungs (pleura), heart (pericardium), or inner lining of the abdomen (peritoneum). Pleurisy (inflammation of the lungs) can cause chest pain when you breathe.

Read this post in its entirety:
What are Early Signs of Rheumatoid Arthritis?

Friday, October 24, 2014

Nicotine May Improve MS Symptoms, Research in Mice Demonstrates

We know that cigarette smoking is bad for our health. The Centers for Disease Control and Prevention (CDC) states that more than 16 million Americans suffer from a disease caused by smoking, such as cancer, heart disease, stroke, lung diseases, or diabetes. In the United States, cigarette smoking is responsible for more than 480,000 deaths per year, including an estimated 41,000 deaths in persons exposed to secondhand smoke. Worldwide, tobacco use kills more than 5 million people annually with numbers growing each year.

Epidemiological studies have reported that cigarette smoking increases the risk of developing multiple sclerosis and accelerates disease progression (Sundstrom, 2008). A recent study demonstrated that in a large population of MS patients in England, current smoking behavior was associated with more than 2.5-fold increased risk of death. In addition, the life expectancy of current smokers with MS was reduced by about 10 years as compared to non-smokers with MS (Manouchehrinia, 2014).

It is logical that smokers who understand the increased risk of tobacco would want to do what they can to limit their exposure to nicotine or other harmful chemicals while smoking. Hence the tobacco industry has developed “reduced exposure” or “light” products containing lower levels of nicotine, nitrosamines, or other chemicals deemed to be potentially toxic. However, these ultralow nicotine or tobacco-free cigarettes may be worse than their full flavor versions.

Researchers comparing the effects of exposure to full flavor, nicotine-free, or ultralow nicotine products on the integrity of the blood-brain-barrier (BBB) found that nicotine-free and ultralow nicotine cigarettes are potentially more harmful to the BBB endothelium than regular tobacco products. This study demonstrates that the detrimental effect of tobacco smoke on the BBB is strongly correlated to the tar and nitric oxide levels in the cigarettes rather than the nicotine content (Naik, 2014).

Meanwhile, a different team of researchers have assessed the effects of nicotine and non-nicotine components of cigarette smoke on experimental autoimmune encephalomyelitis (EAE), a form of MS induced in mice. They found that nicotine significantly improved the severity of EAE, as shown by reduced demyelination, increased body weight, and attenuated microglial activation. Nicotine administration after the development of EAE symptoms prevented further disease exacerbation, suggesting that it might be useful as an EAE/MS therapeutic agent (Gao, 2014).

Read this post in its entirety:
Could Nicotine Be Used to Treat MS Someday?

Monday, October 13, 2014

I Hate "Good Enough"

Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.

Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.

I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.

But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.

In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.

If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.

Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.

Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.

These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.

What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.

Read this post in its entirety:
Acceptance: A Tough Lesson to Learn

Friday, October 10, 2014

Trigger Finger and RA

Trigger finger (also called stenosing tenosynovitis or stenosing tendovaginitis) is a painful condition in which a finger or thumb becomes “locked” in place after it has been flexed. There may be clicking, popping, or a catching sensation in the affected finger, which becomes difficult to straighten without assistance. Some patients may experience stiffness and reduced motion without the characteristic catching or locking.

Stenosing tendovaginitis (i.e., narrowing inflammation of the tendon sheath) can affect any of 23 extrinsic tendons that power the wrist and hand. However, trigger finger most commonly affects the little finger, ring finger, or thumb. Additional symptoms include a bump or lump (nodule) at the base of a finger near the palm, tenderness, or lingering soreness at the base of a finger or thumb.

What causes trigger finger?

Trigger finger is caused by inflammation and/or hypertrophy (enlargement) of the tendon sheath. This inflammation narrows the space in the tendon sheath, which acts like a tunnel through which the tendon glides, and progressively restricts the motion of the flexor tendon passing through the wrist or hand.

A tendon is the strong tissue that attaches muscle to bone and helps us move parts of our body. When a muscle in the forearm contracts and pulls on the tendon attached to a finger, it causes that finger to bend (flex). A tendon which travels through a narrowed sheath may be able to move in one direction but be unable to slide back into its original, neutral position. This causes the finger to remain in a flexed position.

Who gets trigger finger?

Although anyone can develop trigger finger, it occurs more frequently in women than men (4:1 ratio), especially in women over the age of 40, and in people diagnosed with diabetes, rheumatoid arthritis, hypothyroidism, amyloidosis, or carpal tunnel syndrome. More than 65% of patients with rheumatoid arthritis will develop some form of tenosynovitis of the hand or wrist (Skirven, 2011).

Research shows increased risk of developing problems with tendons in the hand and wrist in people who perform highly repetitive and forceful jobs. For example, musicians, such as piano players and guitarists, exert significant stress on multiple tendons in the wrist and fingers. They are prone to developing tendonitis, especially if they dramatically increase their practice time (Amadio, 1990), and are at risk for developing trigger finger.

Read this post in its entirety:
Trigger Finger: A Complication of RA and Diabetes

Thursday, October 2, 2014

Carnival of MS Bloggers #160

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

by Lisa Emrich

Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.

Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.

I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.

But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.

In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.

If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.

Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.

Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.

These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.

What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.


This concludes the 160th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 6, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 4, 2014.